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Growing Up With the Uninvited Companion of Juvenile Dermatomyositis

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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.

Originally published: June 8, 2016
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