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<p>What questions do you have about PH1?</p>
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A Broadway Performer’s Journey With Schizophrenia

Meera was at the peak of her Broadway career when she was diagnosed with schizophrenia. Now, 25 years later, as she looks back at her journey and how her perspectives on schizophrenia, treatment, and her relationships have evolved, she’s sharing her story to help show others they are not alone. We recently spoke with Meera to learn more about her journey with schizophrenia from diagnosis to treatment, and how finding the appropriate treatment plan for her has positively impacted her life. Can you share a little about the time leading up to your schizophrenia diagnosis? Before my schizophrenia diagnosis, I was at the top of my Broadway career. I was touring internationally, starring in high-profile productions. I lived for the “glitz and glamour” that came with my career but noticed that I would occasionally feel unexplainable bouts of nervousness. It would go away with deep breathing, and, at the time, I didn’t think much of it. Around the time of my diagnosis, I was starring in a show in Las Vegas. Everything was going great, but my boyfriend noticed that my behavior seemed a bit odd, like I had started having conversations with the television. He suggested that we go see a psychiatrist. The psychiatrist diagnosed me with schizophrenia when I was 31. How did you feel about your diagnosis? What has your treatment journey been like? I had never heard of schizophrenia before. It was all new to me, and I didn’t know if it was good or bad, or even if it was permanent. When my doctor first prescribed me medication, I remember sitting on my bed and tossing it flippantly, not thinking I needed it. I was unmedicated for the first year of my diagnosis and watched my life start to unravel. I did not know the journey that was ahead of me. Around this time, my grandma passed away, and, given my diagnosis, my parents insisted I move home to Indiana. We fought and fought. They tried to convince me I had schizophrenia, but I was in denial and rejected the whole thing. I was totally shocked that they wanted me to be on medication. In my mind, being medicated represented being sick—not participating in shows, not acting “normal”—and instead represented experiences with ambulances and hospital visits. All I knew was that theater, this ball that I had rolling my whole life, was no longer rolling. The ball had been dropped, and I watched my career slowly start to slip away. I lost my job, my house, and my boyfriend, and suddenly my life became filled with more hospital visits, more fear, and more hurt. My parents were big advocates for medication, while I was adamant that I didn’t need treatment. What I didn’t know is that actually taking medication, and following your treatment plan are what help you get your symptoms under control and get you back to your version of “normal.” It took me learning the hard way that I needed to accept my diagnosis. I made the switch to a long-acting injectable (LAI) medication, and, once on a treatment plan that worked for me, everything started to turn around. I saw the reward that came along with being compliant, and I was determined to control my symptoms. Over time, with my symptoms under control, I began to land a few jobs, write books, and became involved with music and advocacy organizations. My relationship with my parents also improved when I was compliant, and having this strong support system has helped me understand the benefits of remaining adherent with my LAI medication. Today, I have strong support and treatment teams, including my family, friends, and nurses. Having this bond with my support and treatment teams has helped me feel comfortable and at ease with taking my medication as prescribed—it’s low maintenance and something I barely need to think about. You have already accomplished so much. What other goals do you have for yourself, and what are you looking forward to in your future? I’m in a big transition period right now—my daughters are growing up, and I’m in that stage of my life where I’m preparing to be an “empty nester.” My children’s future is so important to me, and what I’m looking forward to most is watching them grow up and their journey along the way. Because I don’t need to take my schizophrenia medication every day and my symptoms are under control, I feel like my mental health condition has really taken a back seat and hasn’t hindered my life as a mother, wife, teacher, or friend. Right now, I guest teach and, in the future, I might get my master’s or teaching license and become tenured. I don’t see myself going back on Broadway, but I do have plans to participate in my local theater company. My husband and I are also very excited to travel more. I would also eventually like to do more writing. I’ve written a few books and may change one that I wrote about my journey with medication. It is a noncompliant story from my earlier years when I was newly diagnosed and struggling to accept that I needed to follow my treatment plan. I want to change the ending and share my experience to show everything I was able to accomplish after finding the right medication and the right treatment plan for me. I hope my story will prevent someone from learning the importance of following a treatment plan the hard way, as I did. Every story is unique. If you are an adult living with schizophrenia, talk to your doctor to figure out a treatment plan that’s right for you. Meera has partnered with Janssen Pharmaceuticals, Inc., to share her story. She has been paid an honorarium for her time.

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FDA-Approved CBD and Why it Matters for Treating Epilepsy

As cannabidiol (CBD) is becoming less stigmatized, there’s been an explosion of CBD products available on shelves and online. CBD is a compound found in the cannabis plant, though it lacks the “high” associated with marijuana. Some people are hoping to access its benefits to manage a range of ailments. For those living with 3 rare forms of epilepsy, FDA approved CBD has been proven to effectively reduce seizures. So if you’re looking to use CBD for yourself or your child, how do you know which products have been evaluated for safety and effectiveness so you understand exactly what you’re getting? The FDA plays a key role in evaluating the safety and efficacy of products, and EPIDIOLEX ® (cannabidiol) is the only FDA-approved CBD medicine used to treat seizures associated with Lennox-Gastaut syndrome (LGS), Dravet syndrome (DS), or tuberous sclerosis complex (TSC) in patients one year of age and older. IMPORTANT SAFETY INFORMATION Do not take if you are allergic to cannabidiol or any of the ingredients in EPIDIOLEX. Please refer to the EPIDIOLEX Medication Guide and Instructions for Use for additional important information. Please see additional Important Safety Information & Indications below. FDA-approval matters because, despite its rise in popularity, CBD has flown somewhat “under the radar” when it comes to regulating its safety and effectiveness, manufacturing protocols, and accuracy of what the attached labels claim is in the product. Since 2016, the Food and Drug Administration (FDA) has issued over 90 warning letters to CBD manufacturers making false claims about the therapeutic benefits of CBD products available on-line and at dispensaries. Ingredient listings on these non-FDA approved CBD products can also be unreliable. A 2017 study in the Journal of the American Medical Association (JAMA) found that almost 70% of CBD products sold online did not contain the amount of CBD stated on the package. In 2021, a study that raised the same concerns additionally found some CBD products were contaminated with toxins like lead. Unregulated CBD products may be risky for many reasons. For one, without oversight from the FDA, it’s nearly impossible to know how much CBD is actually in the product, or even if the ingredients listed are consistent from batch to batch. This lack of quality and consistency standards can affect the product’s effectiveness, making it a risky choice for people wanting to use CBD to treat serious medical conditions like epilepsy. Secondly, it’s important to be mindful of potential side effects and interactions with other medications. The safety profile of FDA-approved EPIDIOLEX was thoroughly studied in clinical trials, so the potential safety risks and drug interactions have been characterized. EPIDIOLEX may cause liver problems, sleepiness, suicidal thoughts or actions in a very small number of people. Do not take if you are allergic to cannabidiol or any of the ingredients in EPIDIOLEX. This information is not known for non-FDA approved CBD products, which can pose unknown and potentially serious safety risks, especially for people who are on multiple medications for conditions such as difficult-to-treat epilepsy. Quality control for EPIDIOLEX starts in the greenhouse. Each cannabis plant is bred to yield high levels of CBD, and is grown in carefully prepared soil which contains no heavy metals, no pesticides, no contaminants and no genetic modification. After the plants have been harvested, scientists follow a strict multi-step process to turn the raw material into highly purified CBD. The product then passes through a series of strict quality controls set by the FDA to ensure its consistency and stability, and to guarantee it’s free from contaminants. The FDA approved EPIDIOLEX after meticulous review of the products safety and efficacy data. With EPIDIOLEX, you know exactly what you’re getting, and this transparency includes information about potential risks and side effects. Unlike other CBD products, EPIDIOLEX underwent extensive research, including multiple clinical studies in which the efficacy and safety profile was thoroughly evaluated in patients. EPIDIOLEX may affect the way other medicines work, and other medicines may affect how EPIDIOLEX works. Do not start or stop other medicines without talking to your healthcare provider. Tell healthcare providers about all the medicines you take, including prescription and over-the-counter medicines, vitamins, herbal supplements, and cannabis-based products. You can only get FDA-approved medicine through a doctor’s prescription, which is an advantage for anyone who wants to use CBD to help with seizures. When you get a prescription for EPIDIOLEX, your doctor will work with you to find the right dosage, as well as help you monitor for and/or avoid any unwanted interactions if other medications are also being used . Getting FDA-approved CBD also means potential coverage from your insurance, along with additional resources and support every step of the way. Important Safety Information & Indications (continued) What is the Most Important Information I Should Know About EPIDIOLEX (cannabidiol)? EPIDIOLEX may cause liver problems. Your doctor may order blood tests to check your liver before you start taking EPIDIOLEX and during treatment. In some cases, EPIDIOLEX treatment may need to be stopped. Call your doctor right away if you start to have any of these signs and symptoms of liver problems during treatment with EPIDIOLEX: loss of appetite, nausea, vomiting fever, feeling unwell, unusual tiredness yellowing of the skin or the whites of the eyes (jaundice) itching unusual darkening of the urine right upper stomach area pain or discomfort EPIDIOLEX may cause you to feel sleepy, which may get better over time. Other medicines (e.g., clobazam) or alcohol may increase sleepiness. Do not drive, operate heavy machinery, or do other dangerous activities until you know how EPIDIOLEX affects you. Like other antiepileptic drugs, EPIDIOLEX may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call a healthcare provider right away if you have any signs of depression or anxiety, thoughts about suicide or self-harm, feelings of agitation or restlessness, aggression, irritability, or other unusual changes in behavior or mood, especially if they are new, worse, or worry you. If you are pregnant or plan to become pregnant, EPIDIOLEX may harm your unborn baby. You and your healthcare provider will have to decide if you should take EPIDIOLEX while you are pregnant. If you become pregnant while taking EPIDIOLEX, talk to your healthcare provider about registering with the North American Antiepileptic Drug Pregnancy Registry (by calling 1-888-233-2334). The purpose of this registry is to collect information about the safety of antiepileptic medicines during pregnancy. Because many medicines like EPIDIOLEX are passed into breast milk, talk to your healthcare provider about the best way to feed your baby while taking EPIDIOLEX. Take EPIDIOLEX exactly as your healthcare provider tells you. Do not stop taking EPIDIOLEX without first talking to your healthcare provider. Stopping a seizure medicine suddenly can cause serious problems. What Else Should I Know When Taking EPIDIOLEX? The most common side effects of EPIDIOLEX include increase in liver enzymes, sleepiness, decreased appetite, diarrhea, fever, vomiting, feeling very tired and weak, rash, sleep problems, and infections. EPIDIOLEX may affect the way other medicines work, and other medicines may affect how EPIDIOLEX works. Do not start or stop other medicines without talking to your healthcare provider. Tell healthcare providers about all the medicines you take, including prescription and over-the-counter medicines, vitamins, herbal supplements, and cannabis-based products. What Additional Information Applies to Women? If you are pregnant or plan to become pregnant, EPIDIOLEX may harm your unborn baby. You and your healthcare provider will have to decide if you should take EPIDIOLEX while you are pregnant. If you become pregnant while taking EPIDIOLEX, talk to your healthcare provider about registering with the North American Antiepileptic Drug Pregnancy Registry (by calling 1-888-233-2334). The purpose of this registry is to collect information about the safety of antiepileptic medicines during pregnancy. Because many medicines like EPIDIOLEX are passed into breast milk, talk to your healthcare provider about the best way to feed your baby while taking EPIDIOLEX. What is EPIDIOLEX (cannabidiol)? EPIDIOLEX is a prescription medicine that is used to treat seizures associated with Lennox-Gastaut syndrome, Dravet syndrome, or tuberous sclerosis complex in patients 1 year of age and older. It is not known if EPIDIOLEX is safe and effective in children under 1 year of age. Please refer to the EPIDIOLEX Medication Guide and Instructions for Use for additional important information. You are encouraged to report side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch , or call 1-800-FDA-1088. You may also contact Jazz Pharmaceuticals at 1-833-424-6724 . EPX-25929-0422

Community Voices

Let’s talk about teen & young adult mental health

<p>Let’s talk about teen & young adult <a href="https://themighty.com/topic/mental-health/?label=mental health" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce5800553f33fe98c3a3" data-name="mental health" title="mental health" target="_blank">mental health</a></p>
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Community Voices
Community Voices

Let’s talk about young adult mental health

<p>Let’s talk about young adult <a href="https://themighty.com/topic/mental-health/?label=mental health" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce5800553f33fe98c3a3" data-name="mental health" title="mental health" target="_blank">mental health</a></p>
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Finding Connection on My Alcohol Dependence Recovery Journey

I can still see the flashing sirens and twisted metal left in my wake the second time I ever drank alcohol. I foolishly got behind the wheel of my mother’s car and flipped it. Luckily,  no one was hurt. Although I experienced significant consequences from my drinking early on and knew my relationship with alcohol was unhealthy, I found I couldn’t stop drinking. However, it wasn’t until years later that I was diagnosed with alcohol dependence by a healthcare provider. That’s when I learned alcohol dependence is a chronic disease that can make it hard to stop drinking and cause problems with family, friends, and work. But it took me years to understand that and to get the help I needed. Growing up in Texas, as one of just a few young Black kids in my town, I never felt like I fit in. I would do anything to make friends and to feel a sense of belonging. Once I was a young adult, feeling included often meant drinking. I feel like alcohol is so normalized and ever-present in our culture that people tend to notice when you don’t drink more than when you do drink. Among my friends, drinking was social currency, so for a fleeting time, my hard-partying ways seemed to earn me the acceptance I sought. But soon, my drinking stopped being the solution to my problems; it was the problem. Though many of my friends drank, I drank to the point that I blacked out. I also let alcohol replace activities I used to enjoy. My friends noticed, expressed concern, and warned me to cut back. One friend even said, “You’re drinking too much, and that’s saying a lot, coming from us.” I didn’t heed the warnings, and the consequences piled up. I couldn’t hold down a part-time job. My grades suffered. My friendships did too. Eventually, I dropped out of college. I vividly remember “the moment” — the moment when I knew something had to change. I was sitting in a crowded bar but felt totally alone. I had an epiphany on that barstool: though my desire to make connections and friendships drove me to drink in the first place, it ultimately made me feel isolated. It was then that I knew I needed help but wasn’t sure where to turn. In the Black community, I found that there isn’t a lot of talk about alcohol dependence as a disease or conversation about people seeking help for their drinking. But I was lucky to have an ally, a spiritual advisor who cared about me. He helped me to break through the stigma and shame and to be open about my struggles with drinking. He said, “This is not something that we’re going to ignore and pretend doesn’t exist.” Instead, he embraced me and encouraged me to talk to a healthcare provider who diagnosed me with alcohol dependence. I learned that treatment is available, and I didn’t have to go it alone. Everyone’s recovery journey is unique. Talk to your healthcare provider if you have questions about your drinking patterns or alcohol dependence. My healthcare provider and I decided on a treatment plan that was right for me. When I was drinking heavily, I had given up a lot of activities I once enjoyed. One of those was being out in nature. Hiking, camping, and exploring were all great parts of my childhood and adolescence that I had left behind. Rediscovering this passion has been an important part of my recovery journey. Something else that has helped me along my recovery journey is supporting others who are struggling with alcohol dependence. I decided to go back to school to become a licensed substance abuse counselor. It was there that I met my wife. Then a few years ago, I moved on to embark on a new chapter as an entrepreneur. I wanted to help people who might be struggling to hopefully find the connection I had always sought. Today, I run a business — a bar with no alcohol — and lead camping trips for people who want to connect with each other and nature without drinking. At this point in my journey, I feel like my life is filled with possibilities and purpose. I have more room for the things that are important to me. I am grateful for the meaningful relationships with my family and true friends, who see me for who I am and appreciate the recovery journey I am on. To learn about alcohol dependence and explore whether it might be time to rethink your relationship with alcohol, please visit www.myrelationshipwithalcohol.com . This story is Chris’s alone and does not represent all people living with alcohol dependence. The information included is not a substitute for professional medical advice. Always talk to your healthcare provider. Chris has been compensated for his time. Alkermes ® is a registered trademark of Alkermes, Inc. UNB-003350

Community Voices

Have Questions About Navigating Life Transitions for a Child Living With a Rare Disease?

<p>Have Questions About Navigating Life Transitions for a Child Living With a <a href="https://themighty.com/topic/rare-disease/?label=Rare Disease" class="tm-embed-link  tm-autolink health-map" data-id="5b23ceb000553f33fe99b3c3" data-name="Rare Disease" title="Rare Disease" target="_blank">Rare Disease</a>?</p>
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3 Tips to Make the Most Out of Your CML Care

There’s no doubt about it: the COVID-19 pandemic has shaken things up when it comes to managing chronic conditions, including chronic myeloid leukemia (CML), a type of cancer that starts in the blood-forming cells of the bone marrow and invades the blood. About 15% of leukemias in adults are CML, according to the American Cancer Society . Even as it becomes safer to enter hospitals and doctor’s offices in person, there’s still a level of anxiety about seeing others in the waiting room. Nikki Yuill of The Leukemia and Lymphoma Society, spoke with Dr. Ehab Atallah, MD, from the Medical College of Wisconsin, about the unique challenges that the pandemic has caused for people living with cancer, particularly CML. Dr. Atallah says that cancer treatment has always remained a priority no matter what; doctors have simply adapted to the limited access to people in person. “According to the American Society of Hematology, and experts at the International CML Foundation, there have not been any significant changes to the recommended treatment for newly diagnosed patients with CML or those currently receiving care. Many health care practices have adapted to the circumstances with safety measures to protect patients with CML.” Most doctor offices have pivoted to virtual and televisit appointments, as well as emailing and texting with people living with CML. In-person visits have also been shortened to minimize exposure (where possible), and labs have worked to space out those seeking things like blood work to avoid extra people waiting in the same room. Many people have adapted to the new normal and we could see some of these changes in the format and length of doctor visits becoming the norm even after the pandemic; however, this could hurt patients who are in need of more hands-on care: people whose current treatment plan stops working or is causing them unbearable side effects, or those still seeking something that will stick and make a positive impact on their health. There have been many advancements in the last 20 years in CML treatment and management, according to Dr. Atallah, which also means more options than ever. That, combined with the unique protocols around COVID-19, makes it even more paramount for both you and your doctor to make the most of appointment conversations. This is where proactivity plays an even bigger role. Be fully open with your doctor about life with CML “The more we know about the day-to-day experiences of patients with CML, the better care we can offer. Patients should feel comfortable bringing up challenges and asking questions,” says Dr. Atallah. Reflect on your current treatment – is it still meeting your needs in terms of your response and the tolerability of side effects? Talk to loved ones that you live with or see frequently to see if they’ve noticed any changes in your health status. Prepare for meetings with your doctor or care team, and bring notes about your feelings and response to treatment, as well as how frequently any symptoms impact your daily life. Ask questions and start a dialogue with your care team if you aren’t happy with your response to side effects and/or wish to explore other options. And when talking to your doctor, remember that you’re never complaining when talking about symptoms, however small they may seem to you! That side effect could be the key in making a positive change to your overall treatment plan. Track your experience with CML and your treatment Nikki from The Leukemia and Lymphoma Society says that her organization talks to people living with CML about the importance of “staying in the chronic phase,” meaning that CML isn’t advancing to a more severe phase. One way to recognize any potential red flags when it comes to CML advancement is for people to familiarize themselves with what to expect and watch for. One method she suggests is journaling regularly because “it is a great way to capture data of your day-to-day experience that helps to have an informed conversation.” Tools like the LLS Health Manager or BELONG app can help people hold themselves accountable to this practice, as well as connect them with like-minded people who are going through a similar situation. The Mighty app is also a great community forum to find others living with any type of cancer. Prepare for your visit Once you have identified the areas of concern or topics that you’d like to discuss with your doctor, prepare for your visit by writing down your list of questions or updates and share them with your care team as an “agenda” as soon as your visit starts. In a context where time is ever more precious, this will help you and your providers use the time together to address your most pressing needs. All of these suggestions are key in helping your doctor help you find the best treatment for CML, your lifestyle, and your needs. The more aware and proactive you are about how CML impacts your life, plus the more open you are with your care team, the greater the chance that your doctor can help you find and stay on a care plan that better fits your health and well-being. To learn more about CML and find additional resources, please visit WhatAboutMyCML.com . Learn More 12/21 171562

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There Isn’t Such a Thing as a “Good Cancer”

If you’re living with a chronic condition, it can sometimes seem easy to compare your experience to another’s story and suggest that one is “better” or “worse” than the other. This is something we, as the chronic condition community, do often; we see a loved one going through a difficult experience and decide that our case is the “better” one … so we shouldn’t complain. Especially when it comes to cancer, there are so many different types with varying symptoms, treatment options, survival rates, and other differentiating factors. But the truth is, every cancer case can be scary, confusing, and full of unknowns for the person living through it, and every situation deserves to be treated with the same level of care, love, respect, and support. In the last couple of years, the pandemic has disrupted a lot, including cancer care, but the need for people living with chronic myeloid leukemia (CML) to receive proper attention remains just as important as ever. According to the Leukemia & Lymphoma Society (LLS), CML occurs when a genetic change takes place in an early version of stem cells, the cells that make red blood cells, platelets, and most types of white blood cells. This change forms an abnormal gene called BCR-ABL , which produces an abnormal protein called the BCR-ABL1 which leads to the development of CML cells. The leukemia cells grow and divide, building up in the bone marrow and spilling over into the blood. In recent decades, CML has often been labeled as the “good cancer.” However, not only does this outlook minimize the reality of the person who is living with CML, but it also diminishes the importance of remaining proactive about treatment. Someone who is living with any type of cancer may already feel hesitant to disclose every symptom, question, or concern to their doctor. Add the narrative that CML is a “good cancer,” and it may make some feel as if they’re “complaining.” In reality, you deserve to be heard and validated for your experience regardless of your diagnosis. Nikki Yuill from The Leukemia and Lymphoma Society spoke with Dr. Ehab Atallah, MD, from the Medical College of Wisconsin, to get his opinion on why CML may be deemed as a “good cancer” by some. One reason is that the prognosis and medication options have greatly improved in the last few decades. “Over the last 20 years, with advances in treatment, patients and health care professionals have seen CML become more manageable. Based on data available from 2010 to 2016, the estimated five-year cancer survival rate for those with CML is 70 percent,” he said. He also reiterated the importance of continuing to engage with the treatment, monitor responses to it, and notice major milestones toward remission. When it comes to anyone living with CML, Dr. Atallah says the goal is always to see the number of leukemic cells in the blood go down and help the person get back to their day-to-day life. However, just like anything else, people who live with CML all have different experiences. What works for one person may not work for the other. Some people may notice treatment side effects that disrupt their daily life, while others may not encounter any at all. “In some cases, a [person] may be on a medication that was once working, but the number of leukemic cells starts to plateau or even go up instead of down. This may be due to drug resistance, which happens when cancer cells no longer respond to a medication,” he explains. While the advancements in care are definitely worth celebrating, it’s still important to remain diligent with health management for these reasons. It’s also crucial for you to fully share what you’re going through with your doctor. As mentioned above, Nikki Yuill shares that The Leukemia and Lymphoma Society hears about a lot of people who aren’t fully disclosing everything during doctor visits. In addition to not wanting to sound like a “complainer,” Dr. Atallah says that many might feel as if they’re supposed to “work through it” when it comes to cancer. While side effects are common and to be expected, it doesn’t mean that a person should struggle through them without support from their doctor. Dr. Atallah also encourages his peers to ask more questions too, knowing that some people may not know where to start when discussing their experience with CML. Regardless of whether you view your cancer as a “good cancer” or not, always speak up about what you’re experiencing, whether it’s to loved ones, friends, and especially your doctor. You deserve to be supported, cared for, and validated. To learn more about CML and find additional resources, please visit WhatAboutMyCML.com . Learn More 12/21 171563