Dermatomyositis (Juvenile)

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    Sydney Reed

    How Doctor-Delayed and Missed Diagnoses Harm Rare Disease Patients

    It was Christmas Eve in 2010 when I was hospitalized and diagnosed with juvenile dermatomyositis (JDM), a rare autoimmune disease that affects approximately 5,000 children and adolescents in the United States. During my impromptu holiday sojourn, I remember tinsel hanging from the door of the hospital room and my mom sleeping on a cot beside me while I stayed up watching “Harry Potter and the Prisoner of Azkaban” on my laptop. After my release, I was referred to my first rheumatologist, who agreed with the diagnosis but insisted I get a muscle biopsy to support it, despite my obvious physical symptoms. At the time, I didn’t understand why this evidence was necessary and how important it really was. I couldn’t believe future doctors would actively try to disprove that I ever had JDM. Medicine in general seemed so much simpler then. A person gets sick and the doctor runs some tests which lead to a diagnosis and treatment… right? I had no idea how complicated things could be nor the barrage of delayed and misdiagnoses that awaited me in the years to come. Multiple Complex Conditions Like many autoimmune patients, while the physical symptoms I was presenting were classic in cases of JDM, the way my disease presented itself in my blood work was atypical. This is a problem I would confront multiple times over the next several years, and one I would come to realize can have disastrous consequences, resulting in significant delays in the diagnosis and treatment of serious illness. Since my original diagnosis, I have developed overlapping and secondary conditions such as lupus, Sjögren’s syndrome and postural orthostatic tachycardia syndrome (POTS). This is another commonality among autoimmune diseases: they tend to come in packs. Most recently, I was diagnosed with a small pituitary tumor. While the tumor itself is not cancerous, it is secreting an abnormal amount of adrenocorticotropic hormone (ATCH), which has resulted in Cushing’s disease, a serious condition that arises from an excess of cortisol in the body. On top of my other conditions, this led to debilitating symptoms that have had a massive impact on the progress I have made in the years since my first diagnosis. These symptoms would take away many of my basic abilities to function and take care of myself, and turned my life upside down all over again. Here We Go Again In May of 2018, after two of the best years of my life since my illness began, I suddenly started to experience a long list of new and concerning symptoms. These included: absent periods, chronic diarrhea, loss of appetite, sudden weight gain, severe headaches, blood clots, dry skin, facial flushing and swelling, abnormal bruising, hair loss, dramatic muscle weakness and pain, and the most extreme fatigue I had yet to experience. It took a year to find the 3 mm tumor that was the source of all these issues and another eight months after that to convince doctors this was the cause of my symptoms and begin looking at treatment options that could effectively cure my disease and restore my quality of life. After a second MRI confirmed the existence of a 3 mm pituitary lesion, I was flooded with relief. I never thought I would be so happy to find out I had a tumor. After that, one of the amazing physician assistants at my primary doctor’s office referred me to a local neurosurgeon. A week went by with no word from the surgeon’s office when I received a message from my primary care doctor explaining that the neurosurgeon had refused to see me and sent the referral back stating, “I don’t see any convincing evidence of a pituitary disorder here… could consider repeating scan in three to four years.” And with that, I was back at square one again, with no answers or relief for my progressively worsening symptoms and a waning degree of hope. Unfortunately, this is just one example of many in which a doctor disregarded my symptoms and slighted everything I was experiencing. This one-step-forward, two-steps-back progression would continue for months. In total, l saw 13 doctors in my desperate search for answers and, eventually, treatment. Some of them were wonderful, compassionate and supportive. Others were apathetic, dismissive, condescending, and a waste of time and energy I really couldn’t afford. In just under two years, I spent considerably more time and energy convincing doctors that something was wrong than I did on receiving treatment. Over and over I was told to be patient while I watched myself deteriorate, and as time passed it became increasingly difficult to maintain my resolve in the face of overconfident doctors. I questioned myself countless times throughout this ordeal. I felt ashamed for “doctor shopping” and worried my symptoms were psychosomatic. Thankfully, I haven’t let those moments of doubt and hesitation keep me from pushing forward. I know my body and I knew something was very wrong. I also understood that if I didn’t keep advocating for myself, things would only get worse, and I could lose years of my life and much of the independence and freedom I had worked so hard to achieve in the first place. It Takes a Toll While my situation is frustrating and unfortunate, there is a bigger issue at hand here. The fact is I am just one of an overwhelming number of cases in which patients experienced significant delays and misdiagnosis. According to a report on the global challenge of rare disease diagnosis, the average length of time from symptom onset to an accurate diagnosis for rare disease patients is around 4.8 years, during which time patients will see an average of 7.3 physicians before a diagnosis is made. In a 2013 article by Kaiser Health News, patients safety experts reported, “diagnoses that are missed, incorrect or delayed are believed to affect 10 to 20 percent of cases, far exceeding drug errors and surgery on the wrong patient or body part, both of which have received considerably more attention.” Serious lifelong illness erodes the integrity between your body and your sense of self, but in my experience, receiving a diagnosis, regardless of the severity, is much easier to cope with than the process leading up to it. Going through this diagnostic process is not just exhausting: it’s traumatic. When your concerns are minimized, overlooked, or worse — when you’re told something is simply all in your head — it can cause an immeasurable amount of mental anguish. Veronique Mead, a former family physician diagnosed with chronic fatigue syndrome (ME/CFS), summarized the factors that contribute to the psychological toll of a chronic illness, “There’s nothing like living with a disease to truly understand what it’s like — the death-like exhaustion that doesn’t improve with rest, the vulnerability, the fear that a symptom might be life-threatening, the sense that you might keep worsening until you actually die and no one will be able to help you, the side effects, the frustration and desperation when nothing works.” In addition to the psychological toll, the lengthy fight to receive an accurate diagnosis and appropriate care can have tremendous (and sometimes irreversible) physical repercussions. Patient advocate Abbie Cornett writes in an article about doctor-delayed diagnoses, “While awaiting a correct diagnosis, patients frequently experience worsening symptoms, a decline in overall health and even death. These delays not only have physical health implications, but also cause mental health issues such as anxiety, stress, feelings of isolation, worry and depression. What’s worse, they can significantly lower patients’ quality of life compared with patients who have been correctly diagnosed and are receiving proper treatment.” The Takeaway — for Doctors and Patients Going through the process to reach an accurate diagnosis and subsequent treatment over and over again is demoralizing and has understandably left me feeling a little jaded. It undermines the trust that is the foundation of the doctor-patient relationship, but while my faith in the medical system has been shaken, as a chronically ill person, I have no choice but to rely on this system (and the people within it) if I want to survive. Literally. To any doctors who may come across my story, I hope it encourages you to show the same amount of trust and respect to your patients as they bestow onto you. My health has been my full-time job for the better part of 10 years now. It’s what I eat, sleep and breathe. While I may not have a medical degree, I am an expert when it comes to my body and my illness, and this is true for the vast majority of patients I come in contact with these days. Please appreciate the experiences of the people that put their trust in you and do everything in your power to ensure their faith in you is not misplaced. And to anyone else who is reading this and going through a similar struggle, I hope my experience is proof that you are not alone and encourages you to keep warring on. In her book, “Surviving and Thriving With an Invisible Chronic Illness,” Ilana Jaqueline writes, “It is your body and your responsibility to treat it with confidence, intelligence and above all, compassion… if you want the most out of life with chronic illness, you’re going to have to fight for it.” I couldn’t agree more with her sentiment. As much as I loathe this diagnostic process with every fiber of my being, the truth is every time I go through it, I get better at it. I get smarter, and stronger, and all the things that are necessary to become the ass-kicking tour de force my life depends on me to be. I’m choosing to fight with everything I have for my place here, for my quality of life, and for all the things I’ve ever wanted for my life and my future. I hope you will too.

    Lindsay Hausch

    Finding Joy in the Hospital as I Hold My Child

    I’m sitting here with a faint smile across my lips. My daughter is laying across my lap, her hand cupping the perfect point of her chin. We’re resting and waiting as the medicine drip, drip, drips into her veins. Once a month we come to the hospital’s infusion center for her to get a steroid drip and IVIG blood infusion. We get up with sleep still in our eyes and quickly fill our bellies. We load into the car in our comfy clothes and bags of books and blankets and stickers, ready to camp out at the hospital. The day starts early and wraps around dinnertime, sometimes later. The day after, she’s lethargic and cranky, experiencing a “hangover” from the infusion her body so desperately needs. I dread these long days of being tied to an IV pole, but a part of me craves the comfort of them. The comfort that comes in knowing these are days of healing. God speaks to me more loudly as I sit in the hospital and watch the smiling children with their sunken eyes and patchy hair. Elyse gets an IV in her arm instead of needing a port in her chest, like most of the kids. A doctor from Elyse’s hospital stay came in to do her check up. Tears collected in the bottoms of her eyes as she took in how much she’d grown — how Elyse’s once angry red skin now looks smooth and creamy. Today a nurse gave us a Joy Jar. A jar with a rubber ducky, a soft square blanket, a light up ball and thick, bright crayons. A tall, clown-like man came in with polka dot tennis shoes and oversized glasses. He bent down over his long slender legs and played a ukulele, singing a slow folk song. This isn’t like an amusement park where children come for their fill of happiness. But this jar of joy, and this awkwardly sweet clown are brave and beautiful reminders that this place is full of life and hope. As the kids hum along to a melancholy tune, wearing hats embroidered with the letters NEGU (never ever give up), I see a happy that is fought for — like striking a match in a dark and unfamiliar room. I want to sit and listen to every family’s story. Stories like the three sisters who come every two days to hold their baby sister’s hand during chemo; or the grandma who brings her 3-year-old once a week; her sparse short hair is always decorated with a large pink bow. I want to light a candle for each of them like a birthday cake. I want to hold onto their wishes and blow them like dandelions. As I sit now and see the brave stories unfold, I long to be the kind of person who sings their sad songs with them, and offers jars full of joy. They teach me that joy is fought for, and hope is holding the candle of faith during a long, hard wait. We want to hear your story. Become a Mighty contributor here .

    Lindsay Hausch

    How I Find Joy in My Daughter's Life With Juvenile Dermatomyositis

    I met my close mom friend for coffee. My 2-year-old daughter was in tow, and her 18-month-old son was her debonair date. We rioted the local hipster coffee shop, our toddlers climbing on the benches and shouting, as we collected skeptical glances from the Chapman University students with their laptops, sipping macchiatos and balancing oversized spectacles on their baby faces. The entire cafe let out an exhale as we got our coffee to-go, herding our rambunctious kids outside along with our oversized strollers. It was a cloudy morning, which meant we could actually enjoy a casual stroll outside — like any other mom and her little girl. Some might say we aren’t “normal.” Last year my daughter was diagnosed with juvenile dermatomyositis, which means she cannot be in direct sunlight. Even with the cover of clouds, we have to protect her from too much UV exposure. We use hats, UV clothes, sunscreen, and parasols, but when she is having a flare up, even all of those precautions don’t always prevent her from getting a painful rash on her face, elbows, hands, and knees. But this fall day, walking beneath the protection of clouds, we felt free from the burden of hiding. My friend and I talked freely. The kids chased each other. Smiles were contagious and laughter came easily. A couple hours later the sun peaked out, reminding us our precious morning was ending. I put my daughter in her car seat, and decided to drive around the downtown area so she’d fall asleep. As I began our drive, my daughter complained that her fingers were hurting. Our morning outside was having its effect. As my daughter quieted down and gently gave in to sleep, I let my mind wander to the sad thoughts I usually avoid. My daughter would never feel the warmth of the sun on her face, without it hurting her. The realization stung more than usual. Tears blurred my vision, and I blinked to let them roll boldly down my cheeks. I paused my car at a stop sign, and looked up to see a white church sign with big block letters. “Create your own sunshine,” it read. The intersection was empty, so I grabbed my phone and snapped a picture. I knew it was a photo I would treasure, a story I would tell my daughter about one day. In life we will all face limitations. Whether it’s the form of disabilities or disease, mental illness, grief, or the eventual effects of age, life eventually presents struggle, seen and unseen, that influence our every day lives. Sometimes we are born with our limitations; sometimes they show up and surprise us one day in a diagnosis. Whether it’s something we’ve lived with for a lifetime or a new normal, there will be days when the loss surprises us with a sharp new pain. As I live day by day, hour by hour, my daughter’s limitations present themselves in new challenges that I don’t always anticipate. Sometimes it’s the same old challenges that suddenly wear a hole in my heart like the toe of an old sock. My greatest fears and vulnerability loom beneath the surface of my imagination like a monster under the bed, making me want to run and hide — or hang my head in shame. But when I face the limitations forced on me by a world I can’t control, I can stop, and look up and see the challenge of each new day: “Create your own sunshine.” Pain and suffering leave gaping holes in hearts and lives. Limitations will taunt, accuse, and challenge me to believe that I’m whole. But maybe those holes can be the place where I can plant the seeds of sunshine. As I face the places in life where limitations meet disappointment, I am challenged to fill the hurting places with resilient hope. Yes, on life’s surfaces that seem hard and unbending, I have to dig deep within my soul to muster a melancholy joy, born out of struggle, like the dandelion that breaks through cracked concrete. I’ve always taken sunshine for granted, like I’ve come to expect the sunrise and sunset each day, as an unwavering promise. But as I face life with my daughter’s new limitations, my eyes are opened to the hidden blessings cupped within each new day. Each new day presents a new opportunity to create our own sunshine. Sunshine that proclaims joy and hope with brightly colored hats, with frilly parasols, and chasing the waves on the beach at sunset. It means making our home, our respite from the sun, a place filled with laughter and toys and lots of friends to come and play. The warm sun might not kiss my daughter’s face in the way I would expect, but my family is faced with the beautiful and unique challenge to create our own sunshine, like the defiant dandelions that sprout up in life’s cracks. We want to hear your story. Become a Mighty contributor here .

    Gretchen Quiteles

    Juvenile Dermatomyositis: Lady Gaga Helps Me to Speak Up About Illness

    Many celebrities have been coming out about their chronic diseases and how it’s been affecting them in their daily lives. From Lady Gaga to Selena Gomez, these people have given me the courage to speak out to loved ones and acquaintances about how my body actually feels at that moment. How it’s not that people don’t want to know, they just don’t know. When I was diagnosed with juvenile dermatomyositis at the age of 15, I always felt as if I was a burden to people around me – my friends, family, teachers and peers. I felt as if I was only paid attention to when I was in a hospital bed, truth be told. I hated it. I was always in pain from walking up a step, speed walking to my next class and even laying down. But yet I never told anyone because I was always scared. I’d notice myself tell the nurse that on a scale from one to 10, the highest I’ve ever given was an eight. I never wanted to say 10 because I was truly scared to say I felt a 10. To this day, at the age of 25, I’m still scared. I’m scared to let my work know it’s been hard for me to get out of bed even though I slept eight hours, how little stressors can trigger anxiety and how I prefer to stay at my desk to rest than constantly get up to talk to colleagues. After seeing posts from Selena Gomez and Sarah Hyland addressing their condition in public, I was inspired and given the courage to speak up more. Which was why I wrote an article about how I ran a half marathon with my condition. Now Lady Gaga has given me the strength to speak up and let it be known that just because I look healthy doesn’t mean I’m not in pain. After watching her documentary “Gaga: Five Foot Two,” I felt extremely empowered. She let cameras into her life at her most vulnerable moments. I’m not talking about her relationship or career, I mean her health. The part we fail to look at when idolizing an artist. As I saw her crying in pain, I started crying because I’ve felt that pain before but I felt ashamed for feeling it. But here’s a strong, successful woman with this condition who is not ashamed. Who doesn’t let it stop her from being the beautiful woman she is, in and out. For that I say thank you, Lady Gaga. For 10 years I have been scared to let my boyfriend, mom, friends and everyone around me know that, “Hey, I’m feeling some chronic fatigue and it feels a bit rough today,” or even “I’m going to have to stay in this week to recharge my body.” Why I felt such a connection with Lady Gaga is because she’s doing so much with her life, which is why people accused her of lying and faking her fibromyalgia. I work full-time and I am a part-time student, in a strong committed relationship, a compassionate friend, loving daughter, athlete, runner, dog mom and more. Because of all those things I listed, which I’m incredibly proud of, I was scared to tell people I’m in pain, that I’m feeling fatigue. But thanks to Lady Gaga, I no longer am. It’s possible to have a chronic disease but also be your best self. And she helped remind me that even if you’re in pain and feel vulnerable, you’re the strongest monster you’ll ever know. We want to hear your story. Become a Mighty contributor here.

    Gretchen Quiteles

    Running a Half-Marathon With Juvenile Dermatomyositis (JDM)

    Editor’s note: The following is based on an individual’s experience. Please consult your doctor before beginning new exercise or training programs. At the age of 15 I was told I wouldn’t have a normal life again. At the age of 23 I ran my first half-marathon. In spring 2008, I was diagnosed with an idiopathic autoimmune disease called juvenile dermatomyositis (also known as JDM). A disease diagnosed in children that can cause rashes, muscle inflammation and muscle weakness. When I received this diagnosis, I was in shock because I was only 15. The more I learned about my condition, the more I realized I wouldn’t be able to run, bike or swim anymore. From then until now, I went through multiple treatments and remedies to ease down the disease. I am happy to say it has been in remission for the past five years, with the occasional flare-ups. When I was told it was in remission, I wanted to prove to myself I was unstoppable, and that was when I decided to run the 2016 Disney World Wine & Dine Half Marathon. Prior to this race I had never run long distance but I believed I could accomplish this challenge. I started with precaution. I did proper research, from self-care to running tips. I made appointments with a pulmonologist to be proactive about my exercise-induced asthma. I reached out to friends who were runners and asked them for tips on clothing and techniques. After gathering all the information, I had to keep in mind I have a chronic disease. So I had to take proper precautions and ensure I took proper safety measurements. I used a calendar to track the amount of miles I would run until race day. I started in May and ended the week before my race in November. I would also sign up for 5Ks to test my progress in a race setting to prepare me for the actual day. Having JDM for the previous nine years, I knew which foods were good and bad for my body. I had to also ensure I had the proper diet to keep my body in shape for the race. I consumed more vegetables, fruits and whole grains in addition to my daily protein intake. I drank more water and electrolytes. I also picked up dietary supplements and ergogenic aids to help me with my training performance. I will say many emotions and thoughts went through my mind when I started training, where I’d compare my performance against people who have been running for years and didn’t have similar health conditions as me. It can either motivate or discourage you. When I felt discouraged, I found ways to turn it into positivity. One example was my belly pouch. I took prednisone when I got diagnosed and gained a lot of water weight. Since then I have struggled to get rid of my belly pouch, and I used that discouragement as motivation. By the end of my training my belly fat had decreased along with my waist size! On race day, I was anxious and nervous. I told myself it was just another day of training. With each mile marker I got anxious and experienced multiple panic attacks. I would hyperventilate the closer I got to the finish line. All I could think was “Wow, I did it” and “They said it wasn’t possible but I made it possible.” Crossing the finish line was one of the biggest accomplishments in my life. I finished with a net time of 2:33:16. The sense of accomplishment I felt could not compare to anything else. When the volunteers gave me my medal and congratulated me, I hyperventilated and cried. I was in disbelief and had to tell myself I actually did it – it actually happened! With the support of friends, family and my boyfriend (who did the race with me), I was able to accomplish this goal. And the constant encouragement from strangers and myself during the race helped make sure I crossed the finish line. When you research JDM, it can be described as potentially life-threatening. It is also known there is no cure to this disease. I was told I wouldn’t live a normal life again and wouldn’t be able to be physically active. It took a lot, but I did it. I still struggle every day with body aches, joint pains and fatigue. But when I look at how I was able to finish a half-marathon, I tell myself anything is possible. We want to hear your story. Become a Mighty contributor here.

    Lindsay Hausch

    This Is What I Know as a Result of My Daughter's Rare Disease

    I look at my friend through eyes propped open by caffeine. Her hair balanced in a messy bun atop her head like always. I was so grateful to steal a moment away from the hospital room to see her sweet, familiar face and to enjoy this ritual. We sip the same coffee blends as we always do — mine a strong Americano lightened by a splash of half and half, her fingers wrap around a non-fat latte. So much the same that it feels comforting, yet surreal against my stark new reality. I got the call confirming the diagnosis we dreaded the afternoon of Ash Wednesday. “The skin biopsy and blood results confirm she has Juvenile Dermatomyositis,” Dr. Milar said simply. My 18-month-old baby girl had a rare disease attacking her body that I could barely pronounce. But more startling than her diagnosis was how quickly the disease overtook her. One week later, my once active toddler couldn’t walk. In a whirlwind, I had rushed her to the emergency room where they had admitted her to begin treatment.   Two days and two long nights later, here I was, sitting in this hospital visitor room, sipping coffee with one of my best friends. She looked at me, waiting for me to begin — for me to say something that could help her understand. Both our kids were close in age, we had shared so much life together. But our easy conversation was halting as I struggled to distill all I was feeling into a coherent story. The words started like a trickle. Then came more easily, until they poured out of me like a song. “Rachel, this is what I know: I know my heart aches to watch my daughter crumple to the ground, her legs too weak to skip, or twirl, or run till she can’t catch her breath. I know a mother shouldn’t have to sing lullabies to calm her baby as she twists and wrestles to be free, tears pooling in the corners of her eyes as she’s poked again and again. I know the mom in the crowded waiting room of the ER — with her head bowed over the sleeping pile of a sick child — belongs at home with her feet propped on a table, her son tucked in his Thomas Train comforter in his bed. I know I’m not alone in suffering. I know we can only drink life in a bittersweet cocktail of overflowing joy and aching emptiness. But I know so much more. I know I am blessed more than my words can ever express. I know a daddy who pushes his baby around the hospital floors for hours on end, who wears an ash cross on his forehead, his eyes filled with tears, but his heart full of unwavering loyalty and trust. A husband who stays all night on one half of a twin cot because he knows his wife needs him. I know a doctor run ragged with slumped shoulders, walking home, used up and tired, whose hands have healed more lives than faces he can remember. I know the warm blanket of peace wrapped around me amidst the chorus of children’s cries and the dull ache of fear and uncertainty. I know more food than my belly can hold, more love and prayers whispered than I can imagine, more kindness than I can repay. I know when we’re broken, the love that binds us back together makes us more complicated, and more beautiful. I know a little girl who can’t walk, but believes she can “fly” through the trees in a green plastic swing. I know a girl who will walk, and skip and run again, with a life story that sings like a love song. I know beauty and grace can exist even in the corner of a hospital room as I’m lulled to sleep by the hum of IV monitors and the snores of my little girl.” The tears were falling uncontrollably now. I didn’t bother to wipe them from my face. She was holding me. Her arms wrapped tightly around my neck reminded me I wasn’t alone, and I knew healing was beginning. We want to hear your story. Become a Mighty contributor here .

    Growing Up With Juvenile Dermatomyositis

    For over two decades now, the word “myositis” has been all too familiar in my life. In December 1993, my life changed forever when I was given the diagnosis of juvenile dermatomyositis (JDM), the childhood form of the disease, at nine years of age. I had been sick for at least two years at the time, going to doctor to doctor trying to find someone who would listen to and take my symptoms seriously. I was always a frail child, and perhaps this disease was wearing on my body long before we knew, but at seven years old it started causing me to struggle in my everyday activities. Since then, dermatomyositis has been my constant and uninvited companion, following me around, at times with a vengeance, throughout my life. Juvenile dermatomyosits is a rare disease, thought to only affect around three to five children per million per year. It’s unlikely that you will meet more than one person with my diagnosis. Some people do not know anyone with my diagnosis. Even many doctors I’ve met through my life have not had a patient with the illness. Having a rare disease is a difficult journey. You are often met with skepticism—even from medical professionals—of the validity of your illness and limitations. Being young and sick is especially hard, because as a child you don’t realize that the way you feel is unusual or abnormal. I grew up thinking that pain was a normal part of the child experience, and even now I struggle to find a way to explain to my peers how my life differs from theirs. Sickness has always been a part of my life, and I cannot remember what it feels like to be healthy. To many people, the word “dermatomyositis” means nothing, but to me it means many things. It means a life altered and broken by an illness no one should have to endure. To me, it means over two decades of suffering greatly. It means painful muscles, a weakened body, and a skin rash that, at it’s worst, can feel like someone threw acid on my face. I’ve had so much inflammation that my body has responded by creating calcinosis, meaning that parts of my body are filled with rock like deposits, which can cause pain, discomfort, and in some areas, decreased mobility. The weakness of my body has caused certain muscles to contract, and the contracture of my left arm cannot extend, and will most likely never extend again. I’ve had so many people in my life doubt the severity of my illness simply because they’ve never heard of it — but make no mistake, this a severe, tough, difficult and debilitating illness. Along with the difficult to endure symptoms, the only treatments available are harsh and strong. I’ve been through a dozen different medications (not even counting medications like pain medications in attempt to manage symptoms) trying to combat this illness and get it under control. Among them are steroids, chemotherapy drugs and transplant drugs, all to attempt to kill the immune system that is actually attacking my healthy cells. There is a deep lacking in medical solutions for this illness, and we desperately need more research on easier to tolerate medications for this illness. The drug I am currently on — the drug I believe has saved me while allowing me to have some quality of life — isn’t even considered an official therapy for dermatomyositis. This leads me to believe there are solutions out there not even being considered. The prognosis of the disease, like many rare diseases, varies so greatly between person to person. It’s hard to know what to expect at the time of diagnosis. Some cases are easily controlled with medication and an individual may end up in remission, leading a life that is barely any different than someone who is healthy. The more severe cases are never overcome and prove fatal. I fall somewhere between these two extremes, having some years that are better and some years that are worse, but I am considered chronically ill and permanently disabled. Even at my best, the fatigue from the illness proved too much for me to be fully independent or able to work. My body would give out after one day of activity, and even something as simple as a minor cold could weaken me to be bedridden for days. At my worst, I lost nearly all normal function and ability to care for myself. At 26 years, I had to rely on my mom as my caregiver to help me with even the most basic of tasks. Despite my many physical challenges, I am thankful for my life. The disease has given me rare gifts, such as perseverance, compassion, and strength in faith, that I would not have without it. I also feel that one reason I am here on Earth is to be a voice for those with JDM — to lessen the isolation they feel by educating others about this illness. My hope is that raising awareness will create increased emotional support by peers, more funds and research on new and innovative treatments and more doctors who are properly educated in treating dermatomyositis patients. I stress being your own advocate. Do not be afraid to ask your doctor questions and do research on your own. It’s your life and your body, and it is your right to be involved in the process of choosing the treatments that are right for you. If you don’t feel like your doctor is well informed on myositis, or if he is not hearing or respecting you, keep looking for a doctor until you find one who you feel is looking out for your best interest. Above all, remember that your illness does not define you. Living with a chronic illness can be emotionally draining, and it is hard not to struggle with how that effects your self-esteem at times. I have found though, that a weak body does not equal a weak spirit or heart. In fact, many of the strongest people I know are my fellow myositis warriors. Do not give up, and know that you are not alone in this fight. The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.