The Mighty Staff

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The Mighty's Eczema Condition Guide

Eczema at a Glance: Eczema, also known as atopic dermatitis, is a chronic inflammatory condition that primarily affects the skin, causing severe itching, dryness, sensitivity, flushing, rashes, scaling or rough patches, and sores that can leak fluid. 1 Up to 10% of people globally experience eczema symptoms at some point in their lives. 2 However, there are likely more cases that go undiagnosed because eczema can mimic other conditions like contact dermatitis and cradle cap in young children. There are many options for eczema management, including medications, lifestyle changes and skin support strategies, but treatment often requires trial and error to find the most relief. Medically reviewed by Dr. Chris Sayed, M.D. What Is Eczema? | What Causes Eczema? | How to Manage Eczema | How To Find a Health Care Provider for Eczema | Mental Health and Eczema| How To Talk To Others About Eczema | How To Support Someone With Eczema | What Is Eczema (Atopic Dermatitis)? Eczema is the common name for atopic dermatitis, a chronic inflammatory disease of the skin. You may have heard other disease names that are similar, such as seborrheic dermatitis (“dandruff”) and contact dermatitis (“allergy on the skin”). We’ll go over the similarities and differences in this condition guide. Understanding how eczema can affect the body will involve learning a little bit more about the immune system, and may require some new vocabulary. Before we dive deeper, here are a few key terms you should be familiar with: Atopy : the genetic tendency of a person to develop allergic conditions Dermatitis : inflammation of the skin Filaggrin : protein in the skin that helps keep the skin barrier healthy Inflammation : Redness and swelling that happens when your immune system detects a perceived threat to the body (like bacteria or a virus), and responds by sending chemicals and cells to that area of the body. Cytokines : inflammatory chemical messengers How Common is Eczema? Eczema is the most common chronic skin condition in children. It typically begins before  the age of two. 3 In 2019, nearly 11% of children in the U.S. were diagnosed with eczema, but in some countries, it affects up to 20% of children. 4,5 It’s more common in African Americans; women also have an increased risk. 4,6 The good news is that the risk for eczema decreases with age. About 3% of the world’s adult population is affected. 7 How Is Eczema Diagnosed? Eczema is diagnosed through a physical examination and study of a patient’s medical history. 8 Unfortunately, there is no definitive test. Your doctor may suggest biopsies or other laboratory tests to rule out other conditions. What Are Symptoms of Eczema? If you live with eczema or suspect an eczema diagnosis, you may experience the following symptoms: 9 Itchy skin (also known as pruritus) Dry or crusty skin Pus or oozing from affected areas Scaly looking skin that often occurs in patches Red, inflamed or irritated looking skin Swollen skin Painful skin Difficulty sleeping Anxiety and/or depression Although eczema is a common skin condition, it can be misdiagnosed because it often mimics other conditions, especially in young children. 10 Misdiagnoses can include: Seborrheic dermatitis (“dandruff”) or cradle cap in young children Contact dermatitis Psoriasis Other skin conditions/diseases like scabies and ringworm Some rare forms of cancer Eczema is often a diagnosis of exclusion, meaning that your doctors might test you for other conditions, or try treatments for other conditions, before arriving at a final diagnosis. Before settling on a final diagnosis your doctor may try: Using antihistamines to see if eczema symptoms resolve or improve. If they resolve, you probably have contact dermatitis, not eczema. If they improve, but don’t completely go away, an allergy is probably the root cause. Using antibiotics or other medications to clear skin infections like scabies. If you’re feeling frustrated and overwhelmed in your diagnosis journey, know that you’re not alone. Finding the right diagnosis can be tricky sometimes. But with the right care team, a little trial and error, and some patience, you’ll be on your way to a diagnosis in no time. What Causes Eczema? The skin is our largest organ. It protects us from bacteria, viruses, and the environment. At first glance, the skin may appear simple but it’s actually quite complex, made of three different layers with different functions. The top layer of the skin is called the epidermis. It contains several types of cells besides skin cells. Some produce melanin, which gives our skin its color and protects us from sunlight. Other cells signal the immune system when an invader shows up. The visible top layer is made of dead skin cells, which form a protective skin barrier. They’re constantly being shed and replaced by cells growing from below. The second layer is the dermis, which contains hair follicles, sweat and oil glands, blood vessels, and nerve endings that sense the outside world. The hypodermis is the deepest layer. It contains nerve roots, bigger blood vessels, and fat cells. Immune cells can move through all of these layers when the body senses invaders. In people living with eczema, the outermost skin barrier is damaged and turns the immune system on hyperdrive. This guide focuses on the relationship between the skin and immune system. It’s important to know that there is no “one” cause for eczema; multiple factors can come into play, and scientists are still trying to understand them all. Some potential causes or exacerbating factors for eczema include: Not having enough filaggrin, a protein important for maintaining the structure of your skin Bacterial overgrowth or not having the right amounts of “good” bacteria in your body Exposure to environmental irritants, such as pollution or pollen Having other allergic or inflammatory conditions, like asthma or a food allergy Does Filaggrin Deficiency Cause Eczema? Filaggrin is critical to your skin’s health. It strengthens the outermost skin cells to form a strong barrier, helps keep moisture in the skin, and maintains proper acidity levels (pH). Many people who live with eczema don’t make enough filaggrin. Most filaggrin deficiencies are genetic, meaning that individuals are born without the ability to make this protein. 3,11 These people are more likely to develop eczema. However, researchers have also discovered that normal filaggrin genes can be “shut off.” The cause? An increase in cytokines, the chemical messengers that direct immune cells to areas where the body is damaged or in danger from invading microorganisms. 12 Does Bacterial Dysbiosis Cause Eczema? Your body is filled with billions of bacteria. You might be thinking, “That’s so gross!” but the presence of bacteria in your body is not always a bad thing! In fact, bacteria play an important role in keeping you healthy. Our bodies contain both helpful “good” bacteria and “bad” bacteria that can cause illness. Usually, they keep each other in balance. But sometimes you don’t have enough good bacteria, or you might have an overgrowth of bad bacteria. This imbalance is called dysbiosis. You may have heard about the gut microbiome – the large, complicated community of bacteria living in your stomach and intestines. Maybe you have taken a probiotic or two to help with some stomach troubles in the past. But did you know that your skin has its own microbiome? Staphylococcus aureus ( S. aureus for short) is a normal resident of this community, but scientists have found that 70% of people with eczema have an overgrowth of S. aureus . Normally, S. aureus isn’t harmful. In fact, 30% of people have S. aureus growing in their nose and on their skin. But remember: People living with eczema have a damaged skin barrier. This makes it easier for bacteria to enter the deeper layers of the skin. When a damaged skin barrier allows S. aureus to enter too deeply, the skin can become even more sensitive and irritated. It’s important to note that antibiotic treatment alone won’t cure eczema, but it can help reduce its severity. But before you frantically apply antibiotics to your skin or try to wash away the bad bacteria, talk to your doctor. Healthy skin has a balanced microbiome, and many strategies that reduce bad bacteria on the skin get rid of the good bacteria too. What Environmental Triggers Can Worsen Eczema Symptoms? Eczema can be triggered by many different irritants and pollutants. Some common environmental triggers include: 13 High heat or sweat Pollen Hard water Fabric softeners and scented detergents Fragrances Rough fabrics Cigarette smoke Animal dander In a recent survey of the eczema community on The Mighty, 29% of people reported animal dander as a trigger and 41% reported fragrance or scented products. Environmental triggers are different for everyone. In some situations they are unavoidable. However, working with your doctor to minimize exposure to known triggers can help reduce eczema symptoms. Does Inflammation Cause Eczema? Eczema and inflammation are as linked as the chicken and the egg: Which comes first? Does underlying inflammation cause eczema? Or is eczema itself causing the inflammation? Scientists are still trying to answer this question. However, the end result is a damaged skin barrier that allows allergens, irritants, pollutants, and pathogens to enter the body more easily. Your immune system recognizes these things as invaders. In response, it turns up inflammation, making symptoms worse. Reducing overall levels of inflammation in the body is a good strategy for anyone living with eczema. Eating healthy, exercising, getting good sleep, and reducing stress are all ways to help reduce inflammation on your own. If you live with other inflammatory conditions, better management of those conditions may also improve your eczema. What Conditions Can Occur Together With Eczema? Eczema often occurs along with other atopic, or allergic, conditions like asthma, food allergies, and nasal allergies. These happen when your skin and mucous membranes (the tissues that line your nose, mouth, and stomach) are overly sensitive to allergic triggers. Symptoms might include rashes on your skin from eczema, tightening in your chest from asthma, an upset stomach from a food allergy, and sneezing or a runny nose from pollen. If you have moderate to severe eczema, you are more likely to have one of these other atopic conditions. Children are sometimes diagnosed with eczema before they are diagnosed with nasal allergies. After they are diagnosed with nasal allergies, sometimes they go on to develop asthma. This progression from eczema to allergies to asthma is called the “atopic march.” How to Manage Eczema Finding a treatment regimen that works for eczema can be difficult because each person experiences the condition differently. Treatments will be individualized, especially if your eczema is more severe. You may be asking yourself: Is there a cure for eczema? What are the treatment options for eczema? How quickly can I find relief for my eczema symptoms? Eczema is a chronic condition that can have periods of worsening symptoms, called flares. Flares can sometimes improve on their own and can be followed by a period with few symptoms, called remission. However, some individuals need medical treatment to get relief. The goal of eczema management is to reduce the severity of your symptoms or to prevent them from worsening. In some cases, treatment can prevent eczema symptoms from coming back at all. That’s why it’s important to work with your healthcare team not only when you’re experiencing a flare, but also when you’re feeling better. Once the eczema flare is under control, the condition can also be managed preventatively with certain medications or self-care. Although there is currently no cure for eczema, there are many different strategies and treatment options to explore with your healthcare team. Some of these options may include lifestyle changes, self-care, and medications. What Are Some Lifestyle Changes That Can Help With Eczema? Eczema and inflammation are closely linked. That’s why it’s important to reduce inflammation overall to best support your body. To help reduce inflammation naturally: Avoid known triggers, such as animal dander, scents/fragrances, and food allergies or sensitivities Eat a nutritious, low-inflammatory diet 14 Practice good sleep habits Reduce stress Stop smoking Some of these changes might be tough, but they can make a big difference in your eczema symptoms. For example, if you know you’re allergic to dogs, try to avoid direct contact with them. Sometimes that’s easier said than done, especially if you have a pet dog yourself. When you can’t fully remove a known trigger, try and reduce exposure as much as possible: vacuum more often and have your dog sleep in a different room. Joanna, blogger of S.KINFLUENCE , shared her experience with implementing these lifestyle changes to help her eczema: “Exercising daily, having an exercise regimen, and having a well-balanced diet in place, changed my mindset from feeling low and almost defeated by the condition to almost being on top of it. It didn’t change my skin immediately, but my mindset changed. I think that’s what really helped me move forward.” What Are Some Home Remedies That Can Reduce Eczema Symptoms? There are many strategies you can use at home to help with your eczema symptoms. Your doctor may write extensive moisturization as your first “prescription.” That’s because individuals with eczema have a damaged skin barrier that is often dry and irritated. Because eczema makes your skin more sensitive, it may take some trial and error to find a moisturizer that works best for you. We’ve created these recipe cards to help you find some skin-soothing moisturization to help ease symptoms. download the recipe card An oatmeal bath is a common home remedy for people living with eczema, especially young children. You can add other ingredients to your bath, such as essential oils or a little bit of baking soda. download the recipe card The great thing about this homemade lotion is that you can control all of the ingredients and make substitutions or additions to best fit your needs. If you’re allergic or sensitive to latex, try the recipe without the shea butter; it can have a latex-like protein in it. Coconut oil may be a good substitute! If you’re not too keen on making your own lotion, there are many different creams to try without a prescription. There are even soaps and shampoos available that may help reduce symptoms at home. Some contain colloidal oatmeal or ceramides, which are a kind of fat that can help repair the skin barrier and improve eczema symptoms. What Medications Are Used to Treat Eczema? Medications for eczema target inflammation and bacterial infections, if they are present. Some medication types include steroids, antibiotics (if you have an infection), immunosuppressants, and biologics. Topicals are medications applied to the skin. The others are medications taken by mouth. Topical corticosteroids , or steroid cream, is usually the first medicine prescribed for eczema treatment. It also helps moderate the severity of flares when symptoms begin to act up. Steroids work by calming down the immune system and are a safe, easy option for individuals living with eczema. Sometimes people worry that their bodies will absorb unsafe amounts of corticosteroid from these creams. One study found that patients with eczema were most concerned about these treatments thinning their skin or being absorbed into their bodies and causing other health issues. However, these side effects occur very rarely in patients who use these treatments as their healthcare provider prescribes. Topical calcineurin inhibitors don’t contain corticosteroids. They work by preventing some parts of the immune system from activating and making your symptoms worse. Topical Phosphodiesterase 4 (PDE4) inhibitors target certain parts of your body that make the inflammatory chemicals, cytokines. Antibiotics can be used to reduce the severity of eczema symptoms if you have an active infection. 15 In individuals with eczema the skin is damaged, making it easier to become infected. Some people also might have bacterial overgrowth on the skin, which can make their symptoms worse. Immunosuppressants work by helping to control or “turn down” the immune system. There are many different types of immunosuppressants available, including medications you can apply to your skin, pills, and injections. Biologics are a special type of immunosuppressant used in moderate to severe eczema, often after other treatments fail to provide enough relief. Biologics are complex medications that block certain cytokines, or chemical messengers, that produce inflammation in the skin. Biologics are an effective treatment option for eczema because of how well they can help reduce inflammation. 16 Talking with your healthcare team is important, not only in reducing your eczema symptoms, but also in helping to prevent your eczema from getting worse. A good team can create a toolbox of resources and interventions that yield the best outcome for your eczema. What Is Phototherapy for Eczema? Phototherapy, or light therapy, is a special form of treatment for eczema that may be tried if medications don’t provide enough relief. Phototherapy uses ultraviolet (UV) light, and is not the same as a tanning bed or going out into the sun for long periods of time. 17 Scientists are still trying to figure out how exactly phototherapy helps eczema, but they do know that this type of light therapy on the skin can reduce inflammation. Phototherapy is not an instant fix, and it usually improves eczema symptoms gradually over several sessions. 18 Phototherapy can also reduce the chance of a flare once your eczema is under control with medications. Common Misconceptions About Eczema Correcting misconceptions about eczema can help people manage their symptoms. 19 So what are some common misunderstandings? Eczema is simple to “fix” Eczema isn’t always easy to treat. That’s because it’s a chronic, long-term condition that can be managed but not cured. The best way to keep symptoms controlled is to find a treatment regimen that works and stick to it. And sometimes, it can take some trial and error to find the best regimen for you. There is a one-size-fits-all treatment for eczema Just as everyone’s eczema is different, so is everyone’s treatment plan.  If you’ve read of one management strategy that helped someone else, but it hasn’t helped you, don’t lose hope! Eczema advocate Joanna shared what helped her in her own journey: “Rather than looking at the condition that my skin was in at that very moment, I just kept thinking towards the one day that this is going to be better and that’s what helped me to get through each day. Eczema is not ‘just’ a dry skin condition, it’s a complex condition that needs a lot of attention.”   Eczema is contagious People often have the misconception that eczema is a contagious condition. Eczema is not contagious, and this misconception can have a negative effect on the social and dating life of someone living with the condition. How to Build a Healthcare Team for Eczema The first step toward managing your eczema is building a healthcare team best-suited to your individual needs. Eczema can range from mild to severe, with symptoms that significantly impact a person’s quality of life. Since there’s no cure for eczema and management is usually long-term, it’s important to build a healthcare team you trust and can work with. You may be frustrated about trying to find a healthcare provider for your eczema. Don’t worry – you’re not alone. Locating the right support for any chronic condition can take time and a little bit of trial and error. A good team can help you manage both the physical and emotional sides of living with eczema. In the beginning, it may only be just you and your primary care physician. A primary care doctor can usually manage mild or moderate eczema and will know if you need specialist care. These healthcare professionals can help manage eczema: Primary care physician (PCP) or pediatrician Dermatologist Allergist or immunologist Nutritionist or dietician Mental health professional It may seem like a long, winding journey to finding the best team for you, but know that it’s worth it. Talking to Your Healthcare Provider About Eczema Talking to a healthcare provider about your eczema symptoms can be nerve-wracking. Whether you’re doing so for the first time or the 100th time, we’re proud of you for taking steps to take care of yourself. Some questions you may want to consider before going to visit your doctor include: How are you sleeping? Are you up all night itching? Are you able to focus throughout the day? How is your mental health and body image? Are you enjoying the things you usually do? Do you feel comfortable with yourself? How are your relationships? Do they feel strained because of your eczema symptoms? Are you able to participate in hobbies you enjoy? Do some of your passions cause flare-ups? There is so much more to eczema than people think. Even healthcare professionals may not fully understand the extent to which the condition impacts your life. That’s why it’s so important to be open and honest about how you’re feeling and the symptoms you’re experiencing, even if they’re embarrassing. You deserve to be heard. Being vulnerable about what you’re going through is possibly one of the bravest things you can do. To help organize your thoughts and navigate your next visit with a healthcare professional, we created a downloadable discussion guide. We hope this guide helps you get the most out of your appointments. download the guide Eczema is a relapsing and remitting chronic illness, meaning that the severity of your symptoms can fluctuate. Your doctor may recommend recording your eczema symptoms to help decide on the next steps in your treatment journey. Keeping track of symptoms can feel overwhelming at times without an organized system in place. The Mighty’s eczema symptom tracker can help get you started. download the tracker You can also find other resources here: Eczema Provider Finder From NationalEczema.org Eczema Resource Center From American Academy of Dermatology Association How to Manage Day-to-Day Life with Eczema What Doctors Don’t Tell You About Eczema Mental Health and Eczema An often-overlooked aspect of living with a chronic illness is the potential mental health impact. 20,21 Eczema is a very “visible” disease and treatment focuses on the physical symptoms of the condition. But people living with eczema also experience anxiety and depression. Talking openly about how it affects your mental health can be just as important as discussing physical symptoms. That’s why we’ve dedicated a section of this condition guide to mental health and eczema. Recent studies suggest people who live with eczema are more likely to also be diagnosed with anxiety and/or depression. According to one study, patients with more severe eczema were more likely to experience suicidal ideation. 22 In a recent survey, 60% of Mighty members living with eczema have experienced anxiety around their condition, and 52% have experienced depression. Doctors are still trying to piece together how eczema impacts mental health: Are the mental health consequences mostly due to dealing with the symptoms of the disease? Are the social consequences of having eczema partially to blame? Or does the inflammation associated with eczema impact the brain and cause depression and anxiety this way? If you are struggling with your mental health due to eczema or don’t feel like you were adequately educated about the effects eczema could have on your mental health, know that you are not alone. In the story What Doctors Don’t Tell You About Eczema , one Mighty member had this to say about how eczema affects mental health: “I wish doctors had told me about the mental health aspect of having a chronic illness and in particular, a skin disorder. Perhaps I would have been able to make more sense of how I was feeling then and not feel so lonely. I wish I had been given some context for my medical condition, for example [telling me] it’s common, so I didn’t feel so alone.” It’s just as important to take care of your mental health as it is to take care of your physical symptoms. There is so much more to eczema than you can see on the outside. Joanna, eczema advocate from S.KINFLUENCE , shared her thoughts: “Sometimes we focus so much on the external we’re not dealing with like internal, like, emotional issues, and I feel like sometimes it is that that causes a lot of problems.” Sometimes turmoil on the inside affects how things are going on the outside. Joanna explained how getting therapy impacted her: “As I started to talk more in therapy about the things that I had gone through in my past, and what I was experiencing in my present, I found that within a couple of weeks or months, the last bits of eczema that just would not go away completely disappeared.” If you’re looking for a place to connect about eczema, you can check out The Mighty’s eczema topic page and post “Thoughts and Questions” for community support. You can also read these stories from Mighties who have been there: A Digital Toolkit for Prioritizing Your Mental Health Eczema and Emotional Wellness How Stress Can Trigger Eczema and How to Avoid a Flare-Up Coping With the Emotional Impact of Eczema My Eczema Isn’t Contagious How to Get Help in a Crisis If you’re struggling with suicidal thoughts, know you are not alone — and there is help for people who feel suicidal. If you need help right now, you can call the National Suicide Prevention Lifeline at 1-800-273-8255 or text “START” to 741-741 . Head here for a list of crisis centers around the world and visit our suicide prevention resources here. How to Talk to Others About Eczema It can be tough to talk about your eczema and what it’s like to live with it. Since people view eczema as a skin disease, they may not understand how profoundly it impacts your daily life and mental health. While talking about difficult things can be draining (you’re doing great, by the way), we hope you can find someone to listen deeply to your needs and experiences — whether it’s your doctor, someone in your family, or a partner. If you need a place to turn, our Mighty community is always here for you. Talking to Friends and Family About Eczema You’ve probably received a concerned look or two around your eczema. It’s a condition that can mimic many others, and some people fear that it’s contagious. In a recent survey, 75% of Mighty members with eczema or their caregivers wanted others to know that eczema is not contagious. One Mighty member shared this experience: “I wish people knew what it was and that it’s not contagious. I used to work in retail and would have dozens of customers asking me if I had poison ivy. I had people who wanted a different cashier because they thought I was contagious … lots of unhelpful, unprompted medical advice. It’s coming from a good place, but it’s not like I haven’t tried everything I can.” Open communication with family and friends will help them understand your experience. You can help them understand how much eczema affects your quality of life and mental health. For example, they may see flaky, dry skin but not understand that the itching prevents you from sleeping through the night, or how it creates anxiety about your appearance That’s why we created this worksheet to help you confidently talk about your unique journey with eczema. Feel free to doodle, jot down notes, and use it in conversations with family, friends, loved ones, colleagues and others in your community. download the worksheet Dating With Eczema Intimacy with eczema can be difficult. You may become hyper-aware of flakes shedding from your skin, or conscious of how often you’re scratching. Dating can be stressful and you may be worried about what a partner will think about your eczema. Will they think it’s “gross?” Will you still feel sexy around your partner during a flare? Eczema commonly occurs for the first time when you’re a kid, so you may be terrified of navigating the dating world for the first time while also dealing with eczema. To get insight on how others have navigated intimacy with a skin condition, we interviewed Mighty contributor Kashinda on dating with eczema. She noted that speaking about eczema can be difficult with a partner. That’s why she usually shares this statement to someone she’d date while having a chronic skin condition: “I will focus on loving the skin I’m in and getting to know you as a person first. You can focus on getting to know me as a person first, and together we will learn how to enjoy one another while respecting my chronic skin condition.” Talking about embarrassing symptoms and what works best for you can be challenging, but remember this: Your loved ones care about you. It may be hard to “break the ice” about eczema at first, but they can become your biggest ally and advocate. How to Support Someone Living With Eczema It can be challenging to support someone with a condition that seems “mild” or “common,” but can have a huge unseen impact. So here’s a reminder you may need today: The journey and the willingness to understand is what matters most. You don’t have to know all the tiny details about a condition to be part of someone’s support system. Being supportive starts with transparent communication, having an open mind and being present. Just because a person may seem “strong” on the outside, doesn’t mean that they don’t need support, especially when in a flare up. Eczema advocate Joanna shares her experience: “Remember that when in a flare or learning to navigate eczema your family member may be very sensitive. Words of affirmation and acts of service can make a world of difference to them especially when they don’t feel 100% themselves.” Eczema can make people exhausted from lack of sleep. You can help by offering to run by the store, cleaning the house, or staying in one weekend during a flare instead of pressuring your friend or family member into something more energy-intensive. It might even be something simple, like watching a TV show together. If you’re unsure how to help, just ask! Your loved one likely has so many things on their plate that need attention, but symptoms make it tough to finish it all. Sometimes, being supportive may have to look a little bit different. Here’s what Joanna had to say: “When life with eczema becomes overwhelming, your loved who is struggling may sometimes push you away. Even if space is created make time for them in other ways so they know you’re still there.” To learn more about the experiences of others living with eczema and how to support them, check out these Mighty stories: The Side of Eczema People Don’t See 27 Ridiculous Things People With Eczema Are Tired of Hearing Eczema Is More Than Dry, Itchy Skin 5 Lessons I’ve Learned About Dealing With a Chronic Illness in the Workplace What People Need to Know About Eczema Discomfort This condition guide was created with support from many Mighty contributors and medical experts. You can learn more about the individuals interviewed for the creation of this resource here: Chris Sayed, M.D. Peter Lio, M.D. Howard Chang, Mighty contributor Kashinda Marche, Mighty contributor Joanna Rose-hazel, Eczema advocate Kat Harrison, Mighty staff member And to the 42 Mighties who took our eczema survey: thank you! 1,2 N;, F. W. B. (n.d.). Atopic dermatitis: Diagnosis and treatment. American family physician. Retrieved March 18, 2022, from https://pubmed.ncbi.nlm.nih.gov/32412211/ 3 Siegfried, Elaine C, and Adelaide A Hebert. “Diagnosis of Atopic Dermatitis: Mimics, Overlaps, and Complications.” Journal of clinical medicine vol. 4,5 884-917. 6 May. 2015, doi:10.3390/jcm4050884 4 Shaw, Tatyana E et al. “Eczema prevalence in the United States: data from the 2003 National Survey of Children’s Health.” The Journal of investigative dermatology vol. 131,1 (2011): 67-73. doi:10.1038/jid.2010.251 5 Nutten, S. (2015, April 24). Atopic dermatitis: Global Epidemiology and risk factors. 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Retrieved March 18, 2022, from https://onlinelibrary.wiley.com/doi/10.1111/all.13401 8 Wollenberg, et al (2020) ETFAD/EADV Eczema task force 2020 position paper on diagnosis and treatment of atopic dermatitis in adults and childrenhttps://doi.org/10.1111/jdv.16892 9 What is eczema? National Eczema Association. (2022, January 14). Retrieved March 18, 2022, from https://nationaleczema.org/eczema/ 10 Siegfried (2015). Diagnosis of Atopic Dermatitis: Mimics, Overlaps, and Complications10.3390/jcm4050884 11 Nutten, S. (2015, April 24). Atopic dermatitis: Global Epidemiology and risk factors. Annals of Nutrition and Metabolism. Retrieved March 18, 2022, from https://www.karger.com/Article/FullText/370220 12 Howell, et al (2007). Cytokine Modulation of AD Filaggrin Skin Expressionhttps://dx.doi.org/10.1016%2Fj.jaci.2007.04.031 13 NHS. (n.d.). NHS choices. Retrieved March 18, 2022, from https://www.nhs.uk/conditions/atopic-eczema/treatment/ 14 Foods that fight inflammation. Harvard Health. (2021, November 16). Retrieved March 18, 2022, from https://www.health.harvard.edu/staying-healthy/foods-that-fight-inflammation 15 Atopic dermatitis clinical guideline. American Academy of Dermatology. (n.d.). Retrieved March 18, 2022, from https://www.aad.org/member/clinical-quality/guidelines/atopic-dermatitis 16 What are biologics treatments for eczema? National Eczema Association. (2022, March 4). Retrieved March 18, 2022, from https://nationaleczema.org/eczema/treatment/injectibles/#:~:text=Biologics%20for%20atopic%20dermatitis%20block,fewer%20symptoms%20of%20atopic%20dermatitis. 17 Sidbury R;Davis DM;Cohen DE;Cordoro KM;Berger TG;Bergman JN;Chamlin SL;Cooper KD;Feldman SR;Hanifin JM;Krol A;Margolis DJ;Paller AS;Schwarzenberger K;Silverman RA;Simpson EL;Tom WL;Williams HC;Elmets CA;Block J;Harrod CG;Begolka WS;Eichenfield LF; ; (n.d.). Guidelines of care for the management of atopic dermatitis: Section 3. management and treatment with phototherapy and systemic agents. Journal of the American Academy of Dermatology. Retrieved March 18, 2022, from https://pubmed.ncbi.nlm.nih.gov/24813298/ 18 Developers, B. (2020, February 25). Phototherapy. National Eczema Society. Retrieved March 18, 2022, from https://eczema.org/information-and-advice/treatments-for-eczema/phototherapy/ 19 Addressing misconceptions about eczema could help people manage their condition over the long term. NIHR Evidence. (2021, July 29). Retrieved March 18, 2022, from https://doi.org/10.3310/alert_42973 20 Yochai Schonmann, MD, MSc, Et Al (2020).Atopic Eczema in Adulthood and Risk of Depression and Anxiety: A Population-Based Cohort Study10.1016/j.jaip.2019.08.030 21 Aaron M. Drucker, Et Al (2016). The Burden of Atopic Dermatitis: Summary of a Report for the National Eczema Associationhttps://doi.org/10.1016/j.jid.2016.07.012 22 Kage, P., Poblotzki, L., Zeynalova, S., Zarnowski, J., Simon, J.-C., & Treudler, R. (2021, December 3). Depression, anxiety, and suicidal ideation in patients with atopic eczema in a prospective study in Leipzig, Germany. International Archives of Allergy and Immunology. Retrieved March 18, 2022, from https://www.karger.com/Article/FullText/520159

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How I Help My Patients Navigate Their PAH Journey

<p>How I Help My Patients Navigate Their PAH Journey</p>

Here’s What You Should Know About Alagille Syndrome With Cholestatic P

Alagille syndrome is a rare, genetic condition that causes build up of a digestive fluid called bile within the liver. Usually, this fluid leaves the liver through bile ducts; however, in individuals living with Alagille syndrome, there are not enough of these critical ducts. Too much bile then remains in the liver, causing symptoms associated with the condition. Bile has important functions in the body: it helps digest fat-soluble vitamins (think vitamins D and K) and removes waste. You may think that an increased amount of bile would be beneficial. Less waste in the body and increased vitamin absorption sounds great, right? Unfortunately, that’s not one of the side effects of living with the condition. In fact, because the bile is unable to easily move from the liver to the small intestine where vitamins are absorbed, people living with Alagille syndrome typically have vitamin deficiencies. Alagille syndrome is a serious, life-threatening condition because the increased bile in the liver can actually damage the organ and potentially lead to liver failure. It can also affect many other organs in the body, including the heart, brain, and kidneys. Navigating an Alagille syndrome diagnosis can vary greatly from person-to-person, even between different family members who live with the condition. In her personal story , Mighty contributor Mia Carella explains what it’s like in her family: “While my husband and son have only been monitored for symptoms they experience, my daughter was born with a very serious congenital heart defect due to Alagille syndrome that needed immediate intervention. While some people may have only one organ system affected, others may have several.” Although monitoring the liver is a primary concern for caregivers of and individuals living with Alagille syndrome, one of the most challenging day-to-day symptoms of the condition is cholestatic pruritus. This persistent and difficult-to-treat itching is caused by elevated bile levels in the blood, and it’s estimated that 88 percent of individuals with Alagille syndrome experience cholestatic pruritus. Mighty contributor Kristen Baugher describes what caregiving is like for her daughter who experiences cholestatic pruritus: “[Alagille syndrome] created an invisible pain itching in my daughter’s body that causes day-and-night suffering.” Although there is no cure for Alagille syndrome, there are some treatments and lifestyle tips that can be used to help make cholestatic pruritus symptoms more manageable. The Child Liver Disease Foundation, a UK-based charity that focuses on liver disease advocacy, shares plenty of tips on their website . Some recommendations include: Keeping your or your child’s nails short and filed Taking cool baths and keeping cool in the summer with air conditioning Wear breathable clothing and especially for children, dress them in clothes that cover the skin or hands to prevent scratching Work with school officials and human resources to provide accommodations as needed Have any additional suggestions for coping with the itch of cholestatic pruritus? Add them in the comments below!

5 Questions To Help You Talk to Your Doctor About Psoriatic Arthritis

You’ve already been dealing with the visible symptoms of psoriasis, but now your health care provider expects a painful yet sometimes invisible condition that affects one out of every three people with psoriasis: psoriatic arthritis (PsA). You’re used to tracking your psoriasis symptoms by looking at your skin, but PsA is different because the inflammation damaging your joints isn’t always visible from the outside. Additionally, your joint pain and stiffness from PsA may not always correlate with the severity of your skin symptoms, even though people with more severe plaque psoriasis are thought to be at a higher risk for developing PsA. So, you may have noticed some stiffness in the morning, pain and/or swelling of your joints, fatigue, or changes to your nails — all symptoms of psoriatic arthritis — but the intensity of these symptoms may not match up with your skin symptoms. In order to manage these psoriatic arthritis symptoms, you’ve most likely been referred to a rheumatologist to help manage your PsA, and you probably have concerns about your diagnosis. Consider using these questions at your next appointment to help you communicate with your rheumatologist about your PsA and get the information and plans you need to manage your PsA and feel better. What caused my PsA? The answer to this question is not always straightforward. PsA is part of an autoimmune condition and these can sometimes be hereditary but not always. Your psoriasis also didn’t cause your PsA even though they are related. Even though your doctor may not be able to give you a definitive answer, there are some things like a history of smoking or joint damage that could contribute to developing PsA, so it’s always worth it to ask because you may gain some insight by reviewing your health history with your doctor. How will we treat my PsA? You and your doctor may develop a treatment plan for you based on the severity of your condition, the frequency and intensity of your flares, and how your PsA has progressed. Your plan may include disease-modifying antirheumatic drugs, physical therapy, and/or anti-inflammatory drugs. You and your doctor will be able to come up with an individualized plan that addresses the symptoms and progress of your PsA. How will my PsA progress? Promptly visiting your rheumatologist and developing a treatment plan can help slow down the joint damage that occurs with PsA. PsA is a chronic condition, but treatment can help control its progress. Discussing your individual case with your healthcare provider can help you get a better understanding of how your PsA can progress. How can we help manage my pain? Your quality of life with PsA is important, and your health care provider should have a variety of tools at their disposal to help you manage the pain that comes from your PsA. Don’t hesitate to voice your concerns about pain or discomfort with your healthcare provider in order to get yourself the care you need. What lifestyle changes and self-care do you recommend? Healthcare providers can recommend ways like nutrition and low-impact exercises to help the inflammation and stiffness that comes with PsA. Massages and physical therapy can also aid in easing your discomfort. The lifestyle changes that you and your healthcare provider discuss can make up part of your treatment or self-care plan.

5 Differences Between UC and Crohn’s You Need to Know

Over 3 million adults in the United States have been diagnosed with inflammatory bowel disease (IBD). People often know that those living with bowel disorders can all experience some level of discomfort or irregularities around using the bathroom that impact their daily lives. However, not everyone is aware that IBS and IBD are not the same condition and can affect the lives and bodies of those who live with them in very different ways. When it comes to talking about IBD, it’s important to know that irritable bowel syndrome (IBS) and IBD are not the same thing. IBS is a more common condition, affecting at least 10 times as many people living in the US. IBS is a problem with how the muscles controlling your bowels work and involves symptoms like constipation, diarrhea and bloating. It does not involve inflammation in the tissue of your bowels or your immune system like IBD. IBD can also involve bleeding, elevated white blood cell count and fever, whereas IBS does not. It is also important to know that there are two types of IBD: Crohn’s disease and Ulcerative Colitis (UC). People who live with either Crohn’s disease or UC can experience significant impacts to their daily lives due to persistent diarrhea, abdominal pain, weight loss and fatigue. And while Crohn’s disease and UC are both chronic diseases characterized by intestinal inflammation, there are some important differences in how these two types of IBD can affect the bodies and lives of those who live with them: Both diseases can involve inflammation of the large intestine, but in Crohn’s disease the inflammation extends deeper into the tissues of your intestines. Crohn’s disease can affect any part of the gastrointestinal tract, which is the technical term for the path that food takes in your body that extends from the mouth to the anus. UC only affects tissues in the large intestine and/or rectum. In Crohn’s disease, isolated areas of inflamed and damaged tissue can occur right next to areas of healthy tissue. In IBD, the areas of damaged tissue are usually continuous and not mixed with pockets of healthy tissue. The symptoms and impacts of UC on your body are usually limited to the digestive tract. This is not the case with Crohn’s which can affect the eyes, joints, skin, and liver. In UC, about 30 percent of people in remission will experience worsening of their symptoms within the next 12 months. In Crohn’s disease, a much higher number of people will have a recurrence of their symptoms: 67 percent. Mighty staff member Angelica lives with UC. However, getting to that diagnosis wasn’t an easy journey for her. Here’s what she had to say about it: “In the past 25 years of having UC, various gastroenterologists have questioned if I actually have Crohn’s instead. When I was flaring and would need to try a new form of treatment, I’d have many kinds of tests to confirm the inflammation was solely in my large intestine. Many people I know with Crohn’s have told me their original diagnosis was UC. At times I used to get anxious that I wasn’t 100 percent certain which it was, but talking to my GI doctor about the different scenarios helped put my worries at bay.” If you’re trying to navigate an IBD diagnosis, a good relationship with your gastroenterologist is key. Make sure to speak with your doctor about any concerns you may have about receiving a UC or Crohn’s diagnosis:  they are here to help navigate between the two major types of IBD.

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Have questions about research and therapies for rare diseases?

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Have questions about research and therapies for rare diseases?

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How Lung Cancer Caregivers Navigate Self-Care and Hope

An  estimated 235,760 adults will get diagnosed with lung cancer this year, and behind many of these scary diagnoses, a wife, husband, child, parent, or friend is thrust into the role of caregiver. For Michelle Underwood, it was easier to see the line between “wife” and “caregiver” in the early stages of her husband’s non-small cell lung cancer diagnosis, but as his disease progressed, these lines became blurred. Her husband was 30 years old at the time of his diagnosis, which came only six months after the birth of their first child. Underwood took an active role in her husband’s care, accompanying him to every appointment, conducting follow-up research, tracking his medications, and sometimes being his voice in appointments when he was too tired to speak. “I was his advocate, I was his wife, I was his caregiver,” she told The Mighty. “Towards the end, I was the decision-maker as well. So really, the patient-caregiver role for us was enmeshed in a way I never expected to experience. It was it was a very full-time role.” While she had dealt with anxiety her whole life, she started having panic attacks during this time. One night while she was nursing her baby, she experienced intense itching that felt like it was coming from inside of her body. Later, she realized she was having a panic attack. In a 2016 survey from the National Cancer Institute, 42.2% of people caregiving for those with advanced-stage lung or colorectal cancers reported feeling elevated levels of anxiety, and 21.5% reported experiencing depression. What “Self-Care” Means When You’re a Caregiver Making time for “self-care” as a caregiver might seem like an oxymoron — when you’re not the one who’s sick, it’s easy to forget about your own care. But when it comes to caregiving, self-care isn’t just a buzzword — it gives you the fuel to keep going. Family caregivers spend an average of 24.4 hours per week providing care, and for those who reside with the caregiver, that number can go up to 45. When Cindy Eastman‘s mother was diagnosed with lung cancer, she would go down to Florida to take care of her. Sometimes, her self-care strategy was to take breaks, even if it meant taking them five minutes at a time. “I started allowing myself even five minutes to not make a phone call, not look something up, not return an email, just not do anything,” she said. “And that was hard. When you’re a caretaker, you feel like you have to be giving constantly. It’s hard to give yourself permission to take five and just not do anything.” For Underwood, the support of family was key. Her youngest sister came to live with them, which she called a “saving grace.” Friends volunteered their time and made meals. Eventually her husband’s parents moved closer to help out. Continuing doing hobbies she loved also helped. She loved to read, so she read a lot. She continued exercising and even kept a blog. Although she didn’t have time to burn out completely, her panic attacks served as a somber reminder that she couldn’t continue taking care of her husband if she didn’t take care of herself. “I knew that if I didn’t get my own mental health in order, there was no way I was going to be able to care for him, no way I was going to be able to care for our daughter,” she said. “So it is incredibly important to get yourself in a stable place so you can continue to care for the person who needs you.” “The Hardest, Most Miserable. and Most Beautiful Thing” While Underwood wouldn’t wish her caregiver journey on everyone, she does say there were sparks of good. The experience forced her to figure out what was important to her and deepened the relationship she had with her husband. “We got to know each other on a very different level,” she said. “There had to be no shame. There had to be no fear. He trusted me literally with his life… Being a caregiver was the hardest, most miserable, and most beautiful thing I’ve ever had to do.” She encourages other caregivers to be honest and direct about how they’re feeling. Seek out support from friends, family and community. Through a mutual friend, she was able to connect with a woman whose husband was also facing a cancer diagnosis. Supporting each other through this time — and even after their husbands’ deaths — was vital. Eastman’s suggestion to caregivers is to not get lost in the role. “Remember, you’re a person, you’re an individual, you have those needs and desires,” she said, “They may not get met every single time, but you do have them and they are important. I’m a mother, a wife, a writer, a daughter, and a caregiver, but I’m also still  Cindy.” And hope? Well, that’s a hard one, but both woman agree it’s hard to navigate a lung cancer journey without at least a little of it. “Hope is everything,” Underwood said. “That’s just part of life. We hope for things every day. We always knew he was going to die one one day from cancer, but we always had hope that we could stretch it out a little longer. And that got us from one point to the next. That hope that he was going to make it to see our daughter go to kindergarten. You start with those little goals, and that’s what gets you to the next place.” If you’re a caregiver, what does hope mean to you? Let us know in the comments below.

What to Know About Non-Small Cell Lung Cancer

No one wants to hear the three words you have cancer. For the estimated 235,760 adults who will get diagnosed with lung cancer this year, these words may come with anxiety, fear, and questions about the future and uncertainty about the long road ahead. When Mighty contributor  Judy Krauthamer first heard these words, she says her life completely shifted. She wrote about her experience in a story for The Mighty: “Betrayed by my unquestioned belief that bad things only happen to other people, I was totally unprepared for the news. I was instantly embodied in a life of uncertainty and unknowing. I became lost under a veil of disease, immersed in hospital visits, statistics and CT scans.” There are two main types of lung cancer: non-small cell lung cancer (NSCLC) and small cell lung cancer (SCLC). The first type — non-small cell lung cancer — accounts for  80% to 85% of lung cancers. People develop lung cancer when malignant cells form in the tissues of the lung. A big difference between non-small cell lung cancer and small cell lung cancer is one you probably could guess: for people with non-small cell lung cancer, the cancerous cells are larger , and for small cell lung cancer, the cancerous cells are small and round. About 80% to 85% of lung cancer patients have non-small cell lung cancer. Unfortunately, lung cancer is the deadliest type of cancer, making up almost 25% of all cancer deaths. Who Gets Non-Small Cell Lung Cancer? Lung cancer actually most often occurs in folks who are older, with the average onset age being about 70. But, a small number of people are diagnosed before the age of 45, and both men and women get diagnosed at similar rates, with men being slightly more at risk. According to the American Cancer Society, the chance that a man will develop lung cancer is about 1 in 15. For a woman, this risk is about 1 in 17. Early warning signs of lung cancer include a cough that doesn’t go away, chest pain, hoarseness, shortness of breath, and loss of appetite. Smoking increases your risk of getting diagnosed with lung cancer — although 10% to 20% lung cancer cases happen to people who never smoked or smoked fewer than 100 cigarettes in their lifetime. Other risk factors include: being exposed to second-hand smoke, exposure to radon, exposure to asbestos, and exposure to air pollution. In can be hard to face a cancer diagnosis people may feel like you “caused.” Mighty contributor Cindy Eastman spoke about this in her story, “When Asked the Question ‘Did You Smoke?‘” “Don’t give me that look… the judgmental one. Don’t look at me like that…  I wish I never did. Or I wish I quit ten years earlier or whatever it would have taken to prevent this stage 4 lung cancer that found its way into my bones within two months.” How Do You Treat Non-Small Cell Lung Cancer? Treatment of non-small lung cancer depends on what stage the cancer is found. Surgery is an option for people in earlier stages of their cancer, while a combination of surgery, chemotherapy, radiation therapy, and immunotherapy may be recommended for people facing later stages. If you’re a smoker who has been diagnosed with lung cancer, quitting has been shown to lead to better outcomes then those who continue to smoke through their cancer treatment. Is There Hope for People With Non-Small Cell Lung Cancer? The short answer is: yes. Thankfully, the number of new lung cancer cases continues to decrease as more and more people decide to quit smoking, and early detection and advancements in treatment are making the disease less deadly. A cancer survivor’s journey isn’t over once they’ve reached remission. In her piece about finding yourself after surviving lung cancer, Mighty contributor Judy Krauthamer shared three myths about getting diagnosed with cancer. The first is that getting a cancer diagnosis means you’re alone. The second is getting diagnosed with cancer always has a “reason” behind it. The third is that there is one set outcome. In reality, you just never know what your journey will bring until you’re on it. For cancer survivors looking for self-care tips, Mighty contributor Cara Tompot offers these eight tips in her piece, “8 Self-Care Tips for Cancer Survivors:” Think of you first: “Above all else, remember to focus on yourself — you deserve it.” Try something new: “Whether it’s something huge like international travel or simply trying to cook a new meal — go for it.” Do something you’ve always loved: “Is there something you’ve loved doing since you were a child or young adult? When was the last time you did that activity? If your answer isn’t in the last year, now’s the time.” Meet new people: “Between meeting people at chemotherapy treatments and connecting with other survivors at support groups… These new friends can have a major impact on your life because they understand what you are going through.” Give back: “By giving back to others combating the same cancer, you can help them cope with the same life-altering decisions you did throughout your battle.” Get in the “mental health” zone: “By focusing on your mental health and awareness, you can ensure that you are taking the best care of your whole self.” Say no: “All of the time, people feel obligated to say yes to various activities and events that you don’t want to participate in. Are you feeling overwhelmed or introverted? Say no. It’s OK.” Think of you first… again: “Do what makes you feel whole and right. Don’t let someone else’s expectations modify your ambitions, motivations and desires.” If you’re a cancer survivor or facing a cancer diagnosis, what would you add?

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The Mighty's Digital Toolkit for Caregivers

Caregiving can be a rewarding experience, but it can also be stressful and challenging at times — and that’s OK! That’s why we’ve created this toolkit, so you can learn more about the ins and outs of caregiving and discover helpful resources you can utilize along your caregiving journey. Take what you need, and share it with others too. Here’s what’s included in The Mighty’s Digital Toolkit for Caregivers: A caregiving binder, complete with worksheets to help you better organize important information for the person you care for such as allergies, medical history, provider information and more. A respite care questionnaire that helps you find the perfect respite worker for your specific needs, plus resources for respite workers to use while you’re away. A self-care mini guide to help you destress and prioritize your mental health. P.S. Everything included in this toolkit is downloadable, printable and shareable! The content below is supported by the answers of over 150 caregivers we surveyed as well as caregiving professionals. Karin Willison , Mighty senior editor and blogger at Free Wheelin’ Travel, and Lexi Silva , Mighty Leader and caregiver advocate. What Does It Mean To Be a Caregiver? | Types of Caregivers | Caregiving Binder | How To Find a Caregiver or Respite Help | How To Support Caregivers | Caregiving and Mental Health | What Does It Mean To Be a Caregiver? download graphic Caregiving means something different to every person who steps into the role. Perhaps you’re a husband, wife or partner taking care of your significant other. Maybe you’re the parent of a child with a health condition or disability. Or you may not be related to the person you’re giving care to at all, and are a longtime friend. No matter what your relationship is to the person you help, the caregiver is a critical part of an individual’s support system. To better understand what caregiving means to caregivers, we asked our Mighty community about their experience. Here is what they had to say: “Caregiving enables our loved ones to have the best possible quality of life, for the rest of their life. It is a great responsibility, but also a great honor to be able to change one’s life in that way.” “Everyone has the right to live their lives with dignity, independence and happiness. To me, being a caregiver allows you to be a conduit for a person to have those three things. You can advocate for their rights, assist them so that they can live as independently as possible and help facilitate opportunities for them to pursue their passions or simply things that bring them joy.” “Being a caregiver means providing the support my parent needs. I help her by taking her to appointments, refilling her medications, paying her bills, and occasionally cooking for her. I also provide social support being the only person she really spends time with.” “Love and sacrifice.” “I took care of my father with the help of hospice. I have multiple chronic illnesses myself. Many days we were over extended and wiped out. Yet, I made it through thinking about how I too hope to be home and comfortable when it’s near the end. I was blessed to be able to spend this time with my dad.” Types of Caregivers When people think of caregiving, an image of a home health worker who assists someone with bathing, exercising or eating may come to mind. While medically trained caregivers do play an critical role, caregiving comes in many forms. If you are a person who assists with daily living activities, or supports the emotional or physical well-being of another person, you are a caregiver. Some examples include: A parent or guardian managing their child’s medications and school supports A grandchild shopping and preparing food for their grandparents who can no longer do it alone Someone providing emotional support A child ensuring the safety of a parent with Alzheimer’s A friend who drives another to cancer treatments and helps out their family An individual who researches resources and supports someone through their mental health journey The level of support and responsibility a caregiver provides for another person also varies. For example, an elderly couple where a husband has multiple sclerosis may live with his wife, the primary caregiver. She is the person who provides care to the best of her physical and emotional ability. A secondary caregiver could be a child or family member who can support them in areas of need, such as managing doctor’s appointments, transportation and housework. They may also assist the primary caregiver with errands or help give the primary caregiver time to herself. This is called respite care. A tertiary caregiver may be a home-health physical therapist, occupational therapist or companion to provide socialization. Whether you identify with any of the descriptions listed above or have taken on a different role, your efforts matter. Caregiving doesn’t have a look. It’s so much more than a stereotype. Caregiver Binder Caregiving requires a lot of organization. We know that navigating medical records across different hospital systems can be challenging, especially when there is more than one home care provider in the mix. That’s why we created this printable caregiving binder, so you can consolidate the important information you need to keep track of medical records, relevant contact information and important documents — all in one place. Plus, you can print copies and share them with family members, respite workers and new providers as needed. Medication List With this worksheet, you can write out all of the medications your loved one uses and keep important notes, like the frequency of a specific medication, who the prescribing physician is and any special considerations to remember when giving the medication. Medical Team Medical teams come in all sizes and combinations, but as they grow it can be challenging to remember which role each member plays as well as the relevant contact information. Our medical team worksheet helps you keep track of appointments, phone numbers and the names of everyone on your loved one’s health care team. Allergy List Keeping track of allergies — dietary, seasonal, medical or otherwise — is an important part of caregiving. With this sheet, you’ll be able to write down all the important details, including the person’s reaction. Plus, you can print out copies to give to others so that they’ll be in the know as well. Procedure History When sharing someone’s medical records with a new provider, they’ll want to know your loved one’s procedure history. That’s why we created this worksheet to help you keep track of relevant procedures (both inpatient and outpatient), which physician ordered them and when they were performed. In Case of a Crisis Even though we try to avoid crisis and emergency situations as much as we can, they do happen sometimes. This worksheet will help you prepare just in case. You can fill it out in advance and make several copies to share with ambulance workers, ER physicians and hospital staff. Should a crisis arise, we hope this worksheet can help make it a little bit less stressful. Additional Documents We hope the toolkit items we outlined above will help you start a caregiving binder that’s unique to your situation. Some other documents you may want to consider adding to the binder include legal documents like an advance directive or do-not-resuscitate (DNR) order. You can check off which documents you’ve chosen to include. download resource Here are some additional caregiving resources to check out: National Family Caregiver Support Program Caregiver Action Network Caregiving and Cancer Resources How To Find a Caregiver or Respite Help A respite caregiver can be an important part of your caregiving support network. The goal of respite care is to provide short-term relief for you, the primary caregiver, from your typical caregiving duties. Generally, a respite caregiver will take over caregiving responsibilities for a set number of hours. They can be available for a particular afternoon or for a few days or weeks. Respite care can be provided at home or in an outside facility such as an adult day care or hospital. This provides an opportunity for the caregiver to rest, and can also serve as a way to help relieve their stress, as well as protect their mental health and well-being. As a caregiver, you can relax and recharge during your time away knowing your loved one is in a safe environment and being cared for by professionals. Another form of respite care are short- and long-term home health aides that your loved one may be eligible for, depending on their level of independence. These aides usually assist in daily living activities such as bathing, eating and some light cleaning for a set number of hours per week. When the aides are in the home, the primary caregiver is able to rest and leave the house. If you read the previous paragraphs and your first thought was that respite care is just the thing you need, your second thought may turn to worry: How would you pay for it? Unfortunately, paying for respite care can be complicated. If your loved one is eligible for home health, Medicare or Medicaid will cover the cost of care for a certain number of hours per week, as determined by your loved one’s doctor and/or state Medicaid evaluators. If your loved one is not eligible for home health care, payment can be more difficult, as most insurance plans do not cover the cost for this type of respite care. However, Medicare may cover the cost of up to five days in a row of respite care in either a hospital or a skilled nursing facility, depending on the needs of the patient. If your loved one is in hospice, then respite care may be covered. In order to help you organize and evaluate potential respite care, The Mighty has developed a checklist you can use to determine if a particular respite caregiver is a good fit for your situation. It’s important to feel comfortable with your respite caregiver so you can relax and recharge during your break from caregiving duties. We hope this checklist gives you some peace of mind! download resource Once you’ve chosen your respite caregiver, it’s important to help them understand the specific needs and typical routine of your loved one. You should also feel empowered to ask for feedback and/or progress updates on the respite caregiver’s time with your loved one. That’s why The Mighty created a list of daily activities you can personalize as well as a worksheet. These printable tools can help you communicate more easily with your respite caregiver about what your loved one does on a daily basis, the level of assistance they require with performing these activities, as well as what happened during the time they spent together. download resource To learn more about finding respite care, check out these resources: Disability Home Care Guide Hospice Services Medicaid Service and Support Medicare and Respite Care Coverage Private and Additional Care Options: ARCH National Respite Network Care.com Eldercare Locator National Adult Day Service Association How To Support Caregivers While caregiving can be incredibly rewarding, it also can be challenging. Caregivers focus a lot of their time and energy on their loved ones and have the tendency to push some of their own needs aside. In a survey we conducted of 150 caregivers, 52% of the respondents also identified as living with a health condition themselves. Balancing the care of a loved one while also managing a personal health condition can be difficult. But even if you don’t live with a health condition yourself, we know that caregiving can impact your mental health and stress levels, finances, relationships and career plans. That’s why we’ve created this section of the toolkit just for you, with tips, insights and resources from other caregivers to help you along the way. No matter the type of caregiver you are, know that you’re not alone in this journey. It’s OK to feel frustrated and exhausted, and it’s understandable if you need to take a break sometimes — we’re all human. Just because you need some space away from the person you’re caregiving for doesn’t mean you love them less. We asked caregivers about some of the struggles they face in caregiving. Here’s what they had to say: “Being a caregiver is exhausting physically, mentally and emotionally. It can completely change the dynamics of your relationship with the loved one you’re caring for — as well as every other relationship in your life.” “Caregivers need a break sometimes to care for themselves, and we can’t always rely on other family members for that.” “How isolating it can be. How impossible it is to struggle with my own chronic condition while managing my son’s and my mother’s health, too. More compassion. More help. I’m hanging on by a thin thread. And I’m hungry. I wish I had the time and energy to cook healthy meals every day. And I can’t put gas in my car.” “I finally accepted that taking time for myself isn’t selfish. It’s necessary.” “It is vital that the caregiver have their own life away from the person they care for so that their world is not only just caring for the loved one. It will leave you with nothing.” You’re not alone in this — our Mighty community is here for you. The following sections include resources for some of the challenges the caregivers we surveyed face. Maybe they’ll help you too. Pursuing School or a Career Balancing the responsibilities and time devoted to caregiving alongside your education or career can be difficult to navigate. It is estimated that 53 million in the United States are caregivers for loved ones and 60% of those people balance earning a paycheck with their caregiving duties — that’s nearly 32 million Americans who have jobs in addition to serving as a caregiver for a loved one! 1 Many caregivers are also pursuing an education: 1 in 10 is enrolled in college or other classes. Many of these student caregivers also work, on average, 32 hours a week. Seven in 10 of these student caregivers also say caregiving has impacted their academic performance. 2 So how can employees and students who are caregivers find the support they need to help manage their stress alongside the duties of work, school and caregiving? Employees should familiarize themselves with the benefits their company may provide as well as any rights they may have through the Family and Medical Leave Act (FMLA) . Your company may provide things like options to work flexible hours, support through counseling and the ability to use paid time off to care for your loved one. If you are covered by FMLA, you should be entitled to take up to 12 weeks off of unpaid leave a year to care for a spouse, child or parent. A good person to talk to about any benefits you may have or your rights under FMLA is your company’s human resources representative. For student caregivers, the process of receiving support from their school is often less clear. Only 1 in 5 students reported  that their schools had no policies in place to support caregivers of adult loved ones. 3 It was also less apparent which school official students should turn to for support. Student caregivers reported turning to instructors, academic advisors and residential assistants, among others, when they felt they needed support. Some resources you can utilize to help balance caregiving and school include: American Association of Caregiving Youth Caring Senior Service Student Caregiver Scholarship Opportunities Managing Finances Many caregivers assist their loved ones with financial decisions. This type of financial caregiving can involve responsibilities ranging from budgeting for groceries, to helping pay bills, to assuming full control over someone else’s finances with a legal document called a “power of attorney.” If you’ve noticed that a loved one is having trouble managing their money due to memory issues or other health problems, or you are just planning for the future, the Consumer Financial Protection Bureau (CFPB) has created a useful guide to help you decide what type of assistance your loved one needs. The CFPB’s guide will help you decide which type of financial caregiver you are: formal or informal. If you are someone your loved one brings along to appointments at the bank or even adds to a checking account, you are considered an informal caregiver. Formal caregiving involves legal documents and designations like “power of attorney” or “guardian” that give you total or much more control over someone else’s finances. The guide also contains a list of questions to help determine if you are a good fit for being a financial caretaker. There are also more resources to help explain what the legal terms for formal caretakers mean, for example, “trustee” and “guardian.” In addition to assisting with the management of your loved one’s finances, caregiving may also have an impact on your own personal finances. In our caregiver survey, almost 70% of caregivers have a difficult time meeting their essential household expenses. Caregiving can become a full-time responsibility, and juggling two jobs — one at home and one in the office —  can be very difficult. Our survey showed that of those who quit their jobs, 67% of them were parents and 55% of them were taking care of loved ones with or experiencing a mental health condition themselves. If you’re struggling to keep up with your finances, the finances of your loved one or both, you’re not alone. Here are some resources you can use to help explore your options: ABLE Savings Account An Introduction to Long Term Care Insurance An Introduction to Personal Care Agreements Balancing Caregiving Relationships Caregiving can impact relationships you have, both with the person you’re caring for and your relationships with others. Most caregivers don’t report conflict with their family members due to their caregiving relationship. However, relationships with other members of your family can become strained due to disagreements over things like how to best manage finances, which courses of treatment should be pursued for your family member’s illness and how the responsibilities of caregiving should be divided among family members. In a study, over 20% of caregivers reported some level of disagreement with their family members about their loved one’s care. In addition to issues that can arise directly from not seeing eye-to-eye with your family members about your loved one’s care, caregiving can also impact your relationship with your partner. For example, adults who were longer-term caregivers said they weren’t as happy in their marriages as those who had recently started caregiving . This suggests that the strain of caregiving responsibilities builds over time. It’s so important for caregivers to carve out space for themselves and their partners by utilizing things like respite care so they can avoid burnout and lessen the potential negative impacts on their other relationships . Spending time focused on your partner can remind them that you value them and your relationship even though you may have to devote a lot of time and energy to your caregiving duties. Some ideas you can try to focus on your relationships outside the caregiving role can include: Game nights with the family Food delivery and having a date night at home Streaming a new movie you’re both eager to see Playing music together or listening to your favorite songs Going to visit a local museum or park Having a “slumber party” with your child at home Subscribing to a monthly specialty box delivery service where you can receive an assortment of items from crafting projects to snacks Caregiving can also take time away from other relationships outside of the family. It’s important to keep in touch with your friends, and doing so can help support your mental health. You may sometimes feel guilty for leaving your loved one at home or with a respite worker, but know that taking the time for yourself will ultimately strengthen your caregiving relationship because you won’t be as burnt out . If you’re struggling to manage the caregiver relationship, consider family counseling. A counselor may also help you identify signs of burnout in yourself and provide you with additional support and tools to manage the stress involved in caregiving, and how best to navigate balancing relationships as a caregiver. Caregiving and Mental Health The circumstances that caregivers face every day can be stressful. In our survey, 61% of caregivers felt they need more stress relief to help cope with caregiving. These increased levels of stress can affect both your physical and mental well-being. Much like the person you are caring for, caregivers need support for their own health too. Without breaks or relief from the duties and responsibilities of caregiving, life can feel overwhelming and caregivers may develop burnout as a result. This stress and burnout is at least partially responsible for caregivers’ elevated risk of developing a mental health condition. Our survey also showed that 84% of respondents felt that the impact on their mental health had been the most challenging component of caregiving. The American Psychological Association recommends that all caregivers, at a minimum, undergo a mental health screening provided by a health care professional at some point in the caregiving process. In addition to caring for yourself by making the time to seek appropriate care from professionals, self-care can and should be part of your overall mental health care plan. When caregivers make time for themselves, they help to ensure they are physically and mentally healthy enough to continue looking after their loved ones. In order to encourage self-care, The Mighty has included a few gentle reminders in this toolkit. Your needs matter. download resource We also talked to caregivers about what they do to help protect their mental health. Here’s what they said: “I recharge at night — after a long day at work followed by hours of caregiving, I like to snuggle up in my bed and read a good book. Maybe I go to bed too late from it more nights than not, but the quiet recharges me more than anything else.” “Hiking is my go-to destressor. I talk with my best friend on the phone and just get out into nature a little bit. Having a beautiful view at the end doesn’t hurt either.” “Kayaking is my favorite way to destress. I also enjoy curling up on the couch with a good book. Sometimes I get carried away and read for hours, but I think it is important to take that time for myself.” “Having a nice shopping trip where you buy what you like. Pamper days with a bubble bath, listening to your favorite music and spending time with loved ones. Watching a movie, garden or bake — hobbies you enjoy. I love creating handmade cards and gifts.” “By taking each day as it comes, one step at a time, one day at a time. Listen to music, read books, and don’t worry about those things I cannot control.” “Try to go get a massage once a month, have planned phone calls with other moms in similar medical situations. Hand the kids/caretaking over to my husband at least twice a month to go run errands or something alone. Write through my feelings.” “I find hobbies and activities I can do both with my parent and in my own free time. I crochet, read and spend time with my friends.” You can also check out these stress-management tools and resources: American Psychological Association Anxiety & Depression Association of America Insight Timer NPR Isle of Calm: 6 Hours of Calming Music UCLA Guided Meditation Podcast How to Get Help In a Crisis If you’re struggling with suicidal thoughts, know you are not alone. There is help for people who feel suicidal. If you need help right now, you can call the National Suicide Prevention Lifeline at 1-800-273-8255 or text “START” to 741-741 . Head here for a list of crisis centers around the world and visit our suicide prevention resources . Neither The Mighty nor Janssen are responsible for the content or Privacy Policy of any third-party websites. This toolkit was created with funding provided by Janssen Global Services, LLC. © Janssen Global Services, LLC, 2021. All Rights Reserved. 1 AARP, N. A. for C. (2020, May 14). Caregiving in the United States 2020 . AARP. Retrieved September 19, 2021, from https://www.aarp.org/ppi/info-2020/caregiving-in-the-united-states.html. 2 Hartman O’connell, I., & Skufca, L. (2020, September 1). The unique experience of students who are family caregivers. AARP. Retrieved September 5, 2021, from https://www.aarp.org/research/topics/care/info-2020/student-caregiver-survey.html. 3 Ibid.