Doctor showing a radiography to his patient

To the Newly Diagnosed With Osteonecrosis

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I have a rare, degenerative bone disease called osteonecrosis, or avascular necrosis (AVN). It is a painful, debilitating disease without a cure. Many doctors don’t know how to treat it. AVN essentially cuts off the blood supply to the affected bone and the bone begins to die, becoming necrotic.

“Osteo” means bone and “necrosis” means death. It is most often found in the hips, knees, shoulders, and ankles and sometimes spine. You may have osteonecrosis in one or more bones. It can strike at any age, any gender. In people with healthy bones, new bone is always replacing old bone. This process keeps bones strong and also happens when children grow or if a bone is injured. In osteonecrosis, bone breaks down faster than the body’s ability to make strong, new bone. If you do not get treatment, the disease worsens and the bones in the joints break down. You may not be able to bend or move the affected joint very well, and you may have intense pain in the joint.

For the newly diagnosed, here is some information I hope you will find helpful. First of all, you are not alone. We know what it’s like to first hear you have osteonecrosis. I recall I was in shock the day I was told, as I never heard of the disease. I was told it was “bone death” and it seemed like I was frozen in time and disbelief when I heard these words. So what the heck does all that mean? Am I dying?

The answer is no, but one or more of the bones are.

At the time, my orthopedist had told me nothing more and sent me on my merry way. Gee, thanks. I do wish there was more research on this disease, and maybe someday there will be. It’s sad when many doctors get frustrated because they don’t know all that much about the disease either. We definitely need more studies. To try and find answers, I rushed home and sought out my old friend “doctor” Google. I cried, got pissed off and wondered “why me?” Why was this happening to me? I was only 51 at the time, (I’m now 53), so I asked the doctor about the plan of action, in order to try and get on with my job and my life. I was told at 51 I was “too young” for knee replacement, as they only last 10-15 years, so for now I would have to deal with it. I still haven’t had any surgery. I did have steroid injections, which later I was told can make it worse.

The doctors predicted the osteonecrosis came from trauma to my knee when I tore my meniscus exercising. (I always knew exercise was hazardous to your health!) It took me several weeks, if not months to really get over the shock of it all. I have learned now to accept it and just make the best out of it. I do plan on getting PRP injections as my AVN has changed very little in two years, although pain is greater. The MRI and X-rays show a slight change, which is a good thing, but the pain is really exhausting.

Sometimes I see my pain as a sign of weakness or a personal defect I should be able to overcome, but deep down I know I have to be strong, as I deal with this pain every single day. Oftentimes, I try to ignore it and go about my day, but it’s not that easy. Even when I try to push it to the back of my head to focus on cleaning, cooking or work, the pain starts to scream again leaving me frustrated and at times defeated. This is when the issue of self-esteem can come into play, as I just don’t feel like the same kind, loving hard working person I know I am. It’s difficult with osteonecrosis to do what you want with your time, even when you try. Either one knee doesn’t bend, or your hip, so you become frustrated, as simple things like cleaning the bathtub are now challenging.

AVN pain isn’t just constant pain, though that would be more than enough for anyone to handle. The truth is the pain can bring about other health issues, or is caused by an underlying health issue. When you are in pain it can be very hard to think beyond the pain and see the big picture. You may not realize it could be making you tired, sleepless, cranky, and ruining your concentration and self-esteem. Sometimes all of this can cause you to isolate yourself. If you love someone who is struggling with this rare disease, learn about the disease so you can recognize the symptoms easier. Try to show a little extra compassion, as you now know why they are feeling that way. After all, it could happen to you.

Although I hate this being in limbo feeling, I am carrying on as best as I can and you can as well. My advice is to seek out doctors knowledgeable about AVN, check for underlying causes and eat a good, clean diet. Try to find ways to help ease your pain. Don’t stop living, but be more cautious and try not to over do it. You will have great days and days that may suck. You have to be able to forgive yourself on those days you aren’t able to do anything. Never allow your condition to get you so “down in the dumps,” you have a hard time crawling out.

And lastly, it’s great to have a support group. It’s crucial. I have been fortunate to have family, friends and a whole community of others in similar circumstances. I started a support group and people from several countries with this disease have joined. While people in your family and friends might not be able to fully understand the disease, we do. We have it and you are never alone.

To stay strong, something I always reference back to is this saying:

Fate whispers to the warrior, “you cannot withstand the storm.”
And the warrior whispers back,
“I am the storm.”

The Mighty is asking the following: Imagine someone Googling how to help you cope with your (or a loved one’s) diagnosis. Write the article you’d want them to find.  Check out our Submit a Story page for more about our submission guidelines.

 

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When Chronic Fatigue Syndrome Feels Like an Energy-Sucking Vampire

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Chronic fatigue syndrome (CFS) fatigue. The invisible illness vampire. The blood- (or energy-) sucking beast ever at your shoulder, teeth in your neck.

CFS fatigue is invisible. Many people with CFS have no visibly discernible symptoms. Only the bags under our eyes point to the constant torture people with CFS endure, swimming through every minute in a soup of muscle pain, brain fog and exhaustion. Constant CFS fatigue wears down your soul. It is the slow drip-drip-drip of your dreams, your carefree nature, your excitement, your spontaneous joy.

People with CFS are, in every single minute of every single day, exhausted.

CFS fatigue is a tiredness like nothing you have ever felt before. It feels a little like you simultaneously have the flu, a hangover, and ran a marathon the day before. The fatigue can build each day until it is an unrelenting crush. If you push too hard, ignore the blinking orange light — the warning sign — CFS fatigue feels like an overwhelming tide. It feels like wanting to lie down on the ground, right here, right now, and cry. It feels like being 2 years old again, helpless and hopeless and utterly devastated by a tiredness you can’t even recognize, let alone articulate.

People who have not experienced CFS fatigue are not privy to its unsavory habits. They are not privy to its indiscriminate attack, the sting of its sharp teeth. They wonder why you seemed fine one minute, and now suddenly can’t make decisions. Why your eyes go blank and you don’t blink. They can’t understand what’s it’s like being too tired to actually close your eyes, and too tired to focus them either. How you don’t know how exactly who you are, let alone what you want now.

CFS fatigue is with me from the moment I wake to the moment I drift off, wrecked every night. It is, in fact, also with me when I sleep, as my body fails to recharge overnight and my exhaustion stalks my dreams. Numerous times a day, CFS fatigue forces me to lie prone for half an hour/an hour/two hours, a pillow or whatever scrap of material I can find over my face, to snatch precious dark moments of recovery. Come to think of it, a coffin for a bed would come in handy.

CFS fatigue means I have to plan every day in advance. The threat of an all-encompassing fatigue “crash” means if I am going out anywhere, I need to know how I’m going to get there, how long I will be out, the proximity to seating, noise levels, temperature, access to snacks, how I am going to get home. CFS fatigue is why I can no longer go to the supermarket. The lights, stimulation overload, choice, decision-making and physical load is the perfect fatigue storm, rendering me stuck in bed for hours, groceries strewn on the bench.

Supermarkets, surprisingly, seem to be  CFS sufferers kryptonite. Better just stick to the blood…

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When I Decided to Love the Scars From My Crohn's Disease

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Your body is a temple. It is yours to adorn, worship and protect.

And lately, my temple feels like a rundown shanty. During my journey, I’ve racked up my share of scars, poke marks, bruises, iron stains, stretch marks, moon faces, and bald spots. I’ve dropped pounds like bad boyfriends and regained them faster than I can blink. My body has had a traumatic five years with no end in sight. Crohn’s disease has been a nasty case of termites that my temple just can’t shake. It’s demolished the drywall and ruined the plumbing, no pun intended. With each ding, my team of doctors and I team up to do our own styles of repair and renovation. Each “renovation” has almost always been met with a new problem. I finally have that hourglass figure, and Crohn’s gives me a permanent ileostomy bag with a swollen right side. I receive a compliment on my porcelain skin, and my iron infusion infiltrates and leaves a nasty stain forever inked on my forearm. My surgeon completes my colectomy with tiny lacroscopic sites, and the pain medication makes me so violently ill, I tear my sites and end up with big, red scars.

For years, my body has been under siege by the fiery tyrant known as a faulty immune system. My life has been out of my control and at the mercy of whatever treatment we’re hoping will work. Tests and medications, while temporary, can sometimes add to the list of scars that I love to make up crazy stories for. There are days nurses can place an IV within seconds without leaving a mark, but more often than not, I can guarantee I’ll be poked and bruised handfuls of times before they wheel in the ultrasound machine. This has been especially true the past few weeks. My arm has been a lovely shade of bluish purple, courtesy of far too many blown IVs or rolling veins. And thanks to that faulty immune system and slow healing process, they’ve hung around for quite some time. On top of my battered arm, mystery bruises have taken up residence all over my legs. I look like I’ve survived a few rounds against Randy Couture!

These uncontrollable scars remind me that my vanity is alive and kicking. I take the extra effort to do my hair and hide my dark circles, even if it means I’ll need to push back the outing and take a nap. I berate each selfie before ultimately deleting it and trying a new pose, angle, or giving up altogether. I do my own version of Jazzercise in the dressing room to make sure the potential outfit covers my bag. Looking “normal” is a painstaking process that requires much more thought than usual. It takes a lot of camouflage to mask the reminders of my battles.

Now, please, don’t get me wrong. I am proud that each scar shows my will to survive and fight for a better life. But I don’t always want them to be on display for the world. Some days there a reminder that what is supposed to help me heal can take its own toll on my body. There will always be scars and physical signs of my “invisible illness” that I can’t avoid. There will always be storm damage or plumbing problems or missing shingles in my temple. But I am a pretty great architect.

I can’t avoid the damage to my sacred home, but I can always adorn it to not only show the best me, but incorporate the cracks and dings into my style. When I was a kid, I was a pretty big tomboy. I knew nothing about hair and makeup and fashion. But with determination and good ol’ Pinterest, I’m learning quite a lot! With the need to hide bald spots, I’ve become pretty great at styling my own hair. It’s even made me realize that hair is just hair, it’ll grow back, so take a chance! Chop it all off, dye it purple, try out a perm. While my closet may be full of revolving sizes, I’ve developed my own perfect mixture of comfort and country chic. My jeans may be stretchy, but they allow me to get through the day without my ever-bloating belly causing me hassles. After I had my colon removed, I had a purple one (the punctuation mark) tattooed on my wrist. It was my way of reminding myself of how strong I could be and that Crohn’s can’t take anything away from me without my consent. It’s a great conversation starter!

becki parker

I’ve always been embarrassed my these little scars I’ve developed on my nose. After much thought, many discussions, and backing out a few times, my temple is now the proud owner of a new door knocker: a pretty little nose ring. I can’t erase the damage, but I can accept it by making it my kind of beautiful. I can’t avoid the scars that are going to happen to me, but I can learn to love them in my own way. If that way means tattoos, piercings or Prince purple hair, so be it. This is my home for the next 60 or so years, and I deserve to do whatever I need to love it.

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14 Things People With IBD Wish They Knew When They Were Diagnosed

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Receiving a diagnosis of inflammatory bowel disease (IBD), such as Crohn’s disease or ulcerative colitis (UC), may answer some questions about your health — but can also create new ones. How do you manage not only the physical, but also emotional symptoms of these chronic illnesses? Is there anyone out there who understands what you’re going through? What can you expect daily life with IBD to be like?

We partnered with Girls With Guts to find out what people with IBD wish they had known when they first received their diagnoses. They revealed the insight they would have wanted to hear about how to find support, what working with doctors would be like, and how to thrive despite the challenges of their illness.

Here’s what they told us:

1. “I wish I knew just how much this disease would shape my life after being diagnosed at 16. I wish I knew it wouldn’t just negatively impact my life but it would shape my life in many positive ways as well. I am proud of the person I have become because of the challenges and hardships I faced.”

2. “I wish I knew I’d always be tired, sick, and less active in my life because of lack of vitamins and nutrients, leading to any and every problem you can have body-wise. And that I’d have to full-on depend on my mind to get me through the hard times.”

3. “The amount of hospital stays and drugs that seem to have just as many side effects as the disease has symptoms. That I would lose control of my emotions because of the steroids that I am almost always on. How hard it would be to put one foot in front of the other just to get through my day some days.”

4. “I thought having a diagnosis would make life simpler, but I had no idea how difficult it would be to explain my specific condition (systemic Crohn’s disease) to other doctors who aren’t as knowledgeable about the various forms of IBDs. Now, even a routine check-up has to be prefaced with a lengthy and exhausting description of my medical history, which the doctor may or may not even choose to consider.”

5. “[I wish I knew] my life would have been different. That fighting with ignorance, prejudice and selfishness (besides fighting with hospitals, drugs and the illness itself… as it wasn’t enough) would have been a part of my new life.”

6. “The specialists are still learning, too.”

ibd call out image #6

7. “I wish I would have known others with IBD as well. I was diagnosed in 1989 when I was 19 years old (I had been sickly since birth). Just in the past three years or so I have ‘met’ some people online with IBD. It makes a huge difference to belong to a group where everyone understands and everyone is instantly friends because we are all in this together.”

8. “I wish they had immediately told me about Camp Oasis and support groups online so I didn’t feel so alone and like an outcast when I was 9.”

9. “I wish I had been told I would go through the five stages of grief after I was diagnosed and mourn by body and my life.”

10. “I wish someone showed me how other people with Crohn’s disease and ulcerative colitis would help me establish my own ‘normal.’”

11. “One thing I wish I knew when I was first diagnosed with IBD is how unpredictable it can be, and that some days will be better than others, so really make the most of those good days! Also that it is so different for everyone. Symptoms and treatment and what works will be different from one person to the next, but it’s important to never give up hope.”

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12. “I wish I knew when I was diagnosed how much of a community there is out there for IBD patients. I felt very alone in my diagnosis for a long time because I didn’t know anyone personally who had IBD, but through organizations like CCFA as well as social media, I’ve met some amazing people from all over the world who deal with the same problems that I do on a daily basis. They make for great advice-givers and sounding boards, and some have become good friends.”

13. “When first diagnosed, I wished I knew it was not caused by food. Of course, we all know foods can irritate, but food is not the cause. It would have saved me a million guilt trips and a few secret hamburger outings!” 

14. “One thing I wish I had known when I was first diagnosed with Crohn’s disease is that there are so many resources available to help in coping with a chronic illness. For example, there are Facebook groups and a multitude of blogs, both of which are great ways to read about firsthand experiences!” 

What do you wish you knew about IBD when you were first diagnosed? Share your response in the comments.

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Citizen Endo Project Creates Phendo, a Period Tracker App for Women With Endometriosis

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Update: Phendo is now available for iPhones, and can be downloaded for free in the App Store. An Android version will be available in 2017. 

It took only two menstrual cycles for Noémie Elhadad to know something wasn’t right with her body. Growing up in a family of doctors and women with endometriosis, the then 13-year-old was soon diagnosed with the condition herself.

Now, 27 years later, Elhadad, Ph.D., a biomedical informatics professor at Columbia University in New York City, is using her professional and personal experience to revolutionize a type of app most women already have on their phones. The Citizen Endo project – a creation of Elhadad and her team at Columbia Medical Center – revolves around Phendo, a period tracking app that focuses on tracking pain, and citizen science.

Endometriosis, also known as “endo” by those familiar with the disease, is a chronic condition where tissue similar to the lining of the uterus is found outside the uterus. This tissue most often adheres to the outside of the reproductive organs but can also be found anywhere within the pelvic cavity including the bladder, bowel, peritoneum, as well as higher up on the intestines and diaphragm. Changes in hormone levels lead to an inflammatory response around the areas of endometriosis which can cause widespread pain in areas affected, as well as pain during intercourse, urination and/or bowel movements. It may also lead to infertility. Despite its prevalence – around one in 10 women have the condition – little is known about the disease.

“In a way, the fact that the disease has not been well studied is an opportunity here because the field is wide open,” Elhadad told The Mighty. “We can really do something.”

Despite the multitude of apps available, period trackers are far from one-size-fits-all. Today’s period trackers don’t really consider endometriosis, Elhadad said. Many trackers revolve around estimating fertility for the purpose of planning or avoiding pregnancy. While these analytics are important for many women, fertility-based trackers fail to recognize the large population of women who are infertile – many of whom rely on trackers as a way of monitoring conditions like endometriosis or polycystic ovarian syndrome (PCOS). For the 5 million women in America who have endometriosis and the 1.5 million who are infertile, these brightly designed apps with their fertility-inspired imagery often fall short of the community’s needs.

Phendo, which stands for “phenotyping endo,” will be the first period tracker of its kind on the market. “[Endometriosis] is different from other diseases in the sense that it really affects everything in your daily life,” Elhadad said. Therefore, the Phendo app will allow each woman to customize its settings to best suit her pain and symptoms.

Building the Citizen Endo Team

It took Elhadad a while to commit herself to such a personal project. “It was not an easy decision, actually,” she said. “It came out of both opportunity – I have the skills and the expertise to do data science and mobile health and things like that – and just as a patient feeling an unmet need. We still don’t have enough descriptions of the disease that are directly connected to the patient experience.”

Along with Elhadad, the Citizen Endo team includes Mollie McKillop, M.S. in public health, M.A., a third year Ph.D. student and “endo advocate;” and Sylvia English, M.S., who, like Elhadad, has endometriosis.

“I got my first period at 13 and didn’t know there was anything wrong,” English said. “[At 15,] I was regularly passing out at school and couldn’t really stand up most of the time… I was officially diagnosed when I was 22 and have had three surgeries. I’m trying to use this experience to make things better for people somehow. ”

It’s no coincidence that two-thirds of the Citizen Endo team has endometriosis. “[Having endometriosis] changes our perspective and motivations as well,” Elhadad told The Mighty. “You’re motivated for yourself, but you also want to help as many women who experience something similar to what you’ve been through, to prevent other people from having to go through it again.”

The team has been consulting women with endometriosis since day one. “We’re making sure patient voices and women with endometriosis are actually heard while building this,” English said.

This idea of doctors and researchers listening is not typically a part of an endometriosis patient’s experience. “To me, that’s what sticks out about endo,” Elhadad said. “People get left behind and they don’t get heard.”

The team also works with three nurse scientists who specialize in self-management, health literacy and women’s health.

Creating an App for Researchers and Patients

The Phendo app, created using Apple’s ResearchKit and CareKit, is a pure research initiative financed by funding Elhadad receives as a researcher at Columbia Medical Center. Citizen Endo does not accept any commercial or pharmaceutical funding.

Phendo’s goal is three-pronged.

“One is understanding the disease,” Elhadad told The Mighty, “having a full account of the constellation of symptoms and signs that can happen with the disease.”

Once the app hits the market later this fall, Elhadad and her team hope to learn more about how the disease develops and changes. “We already know, thanks to all of the research that happened before, there is at least three subtypes of endometriosis and those have been found through surgery mostly,” Elhadad explained. “It’s endometrioma or superficial lesions of endometriosis or it’s deep-infiltrating endometriosis.”

Now the team wants to know how each subtype affects symptoms, and if there are more subtypes within each type.“There are some questions we don’t know how to answer yet,” Elhadad said. These questions include who develops infertility and why do some patients respond to treatments while others don’t. The app will hopefully find answers through clinical and surgical data as entered by the user.

“The next steps are really to have a set of biomarkers and digital markers for endometriosis,” she said. “So a lab test is a biomarker, but the way the number of steps you take today because of the terrible pain of your cycle, that’s also a marker of endometriosis.”

The second goal of the app is to help users determine and manage what triggers their pain as well as see how their symptoms have developed over time. “There’s this opportunity for each woman to make sense of her own data as well and to figure out what works and what doesn’t work,” Elhadad said.

Through tracking you can start to see bigger trends in the data. “You can start to see what works for you as an individual and what doesn’t,” English explained. “That’s important from the individual level, but it’s also really great to see [for example] there’s this cluster of women and they’re taking xyz drug and it makes their pain really bad three days later. What does that mean in the long-term and maybe they’ve got another trait we can look at that will signify there is something we can do to intervene.”

Lastly, Phendo strives to promote citizen science with the app’s users acting as patients and scientists. “In the design itself of the app there are mechanisms for women to say ‘I have this question about endometriosis,’ or ‘I think this worked for me, does it work for others,’” Elhadad told The Mighty. “So it’s not only your a citizen because you are donating your data, it’s because you are actually thinking about it and hopefully in an empowering way and not in a way that depresses you about your disease.”

Right now Elhadad and her team are finishing the design and beta testing the app with users. “My hope is by September or October we have a minimum viable product that can be tested at scale,” she said. The app will be available to anyone who has surgically been diagnosed with endometriosis as well as those who think they might have the condition but have yet to be diagnosed.

“We also have a selected set of subjects where we know what particular diagnosis they have and which phenotype they have so we can correlate that to the data,” said Elhadad. “We’re kind of running two studies at once, basically.”

Phendo already shows promise. “It’s been really fascinating to see there’s already a pattern happening between what’s going on in the morning versus what’s going on at night,” Elhadad said of tracking her own symptoms through the app. “I didn’t know, even though I’ve clearly been thinking about it for so long. So I’m even learning something from tracking it this way.”

You can visit the Citizen Endo website to learn more about Phendo and be notified when the app launches.

Photo Credit: Jordan Davidson

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12 Truths People Affected by Juvenile Arthritis Wish Others Understood

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According to the Arthritis National Research Foundation, arthritis is the leading cause of disability in America. That means an estimated 50 million Americans, including about 300,000 children, deal with the pain of arthritis on a daily basis. It’s by no means an “old person’s disease.”

Although the number of young people with arthritis is so high, the condition is littered with misconceptions. So we partnered with the Arthritis National Research Foundation to raise awareness about JA. We asked our communities what they wish the rest of the world understood about JA. Here’s what they had to say:

1. “It’s a battle that comes with its own set of dragons and other obstacles, and sometimes you will be down and out for a while. But that doesn’t mean you have to give up on your dreams.” – Victoria Steed

2. “I was 18 months old when I was diagnosed. It was a hard childhood, however, it made me the resilient determined powerfully positive well rounded person that I am today. JA is a horrible thing, but life doesn’t end, and don’t ever let anyone tell you that you cannot do something!” – Danielle Lindoff

3. “You don’t have to put limitations on us. We are aware of our physical limitations. We are just like you, so please don’t treat us differently.” — Carrie Folkerts 

You don’t have to put limitations on us. We are aware of our physical limitations. We are just like you, so please don’t treat us differently.

4. It’s not just achy joints; it’s doctor visits, missed school days and missed special events. Our kids still have to put up with bullying at times for having what is known as an ‘old person’s disease.’” – Gaby Baldenegro

5. “I am not my disease. I am not the medication, the canceled plans, or the wheelchair. I’m not the swollen joints or even the pain. I’m a survivor. What you don’t see is my fight to appear normal every single day. So please stop looking at my arthritis to define me.”  – Katherine Herrmann 

I am not my disease. I am not the medication, the canceled plans, or the wheelchair. I’m not the swollen joints or even the pain. I’m a survivor. What you don’t see is my fight to appear normal every single day. So please stop looking at my arthritis to define me.

6. “I think the hardest part as a parent is hearing him wish for ‘one day without pain.’” – Andrea Thompson

7. “Children are stronger than you think, and sometimes they are hiding some of the pain. It’s easier to hide and ignore the pain than to address it.” – Becca Duane

Children are stronger than you think, and sometimes they are hiding some of the pain. It’s easier to hide and ignore the pain than to address it.

8. “It’s not just aches and pains! It is an autoimmune disease and can affect your skin, eyes, heart, lungs, and neck near the spinal cord.” – Courtney Smith Cooley

9. “Watching your child’s body turn on itself, and then watching them have to go through such grown up things like monthly blood draws, injections, pills and more pills, is completely heart wrenching.” – Jessica Ferguson Garcie

10. “Even though you look normal on the outside and try to keep up and do things with everyone else, you may be dying in pain on the inside.” — Linda Syrko-Shapach

11. “I was diagnosed at 18 months and I am 30 years old now. Kids, keep your head up, it gets better. Plus, your friends will love you for who you are, your disease doesn’t control you.” — Megan Vanellope Mueller 

  1. I was diagnosed at 18 months and I am 30 years old now. Kids, keep your head up, it gets better. Plus, your friends will love you for who you are, your disease doesn’t control you.

12. “I was diagnosed at 8 years old and I turned 40 this year. I want everyone to understand how amazing these kids are and how much daily life can be a struggle. These kids are some of the toughest and most resilient kids. People should take the time to get to know them and learn about their journey.” — Cat Hicks

What are some things you wish others understood about living with  juvenile arthritis? Let us know in the comments.

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