The story of Amelie
Hi, my name is Amelie and I have been diagnosed with Juvenile Polymyositis, an extremely rare autoimmune disease where my immune system is attacking my muscles.
I was always a very active kid before I started feeling sick. I loved to swim, play soccer and cheer. I also attended many events with my Girl Scout troop and vacations with my family.
We first realized something was not right in the beginning of July 2018 when I began walking funny and was tired all the time. I didn’t play very much and I felt weak. My family thought I was just going through a phase or growing pains and even nicknamed me “Lazy Panda”.
My symptoms got worse in August. I had a hard time getting out of bed and I struggled to pull myself upstairs. I became weaker, out of breath and was in pain. I started cheerleading practice and I could not lift my arms above my head to make a V.
My family took me to the doctor where they did a lot of bloodwork and sent me to Rheumatologist, who thought I had Juvenile Dermatomyositis, a form of Juvenile Myositis (JM).
School was starting and I was going into 3rd grade. I was worried about going because my doctor told me I couldn’t do any physical activity and had to stay indoors as much as possible. So I went on the Independent Study program instead.
At the end of August I had an MRI done. Once the results came back I was admitted to the hospital for a muscle biopsy and IV steroids. After 5 days in the hospital for a surgery to get the muscle biopsy and daily steroid infusions, I was released on oral steroids, vitamins and chemotherapy injections (Methotrexate).
After a month and a half of my treatments (and lots of bloodwork!) I went to the doctor for a follow up. My bloodwork didn’t improve and some got worse. My biopsy results showed I have the more rare form of JM, Polymyositis. My doctor had to increase my dosage of chemotherapy injections and I also had to start monthly infusions.
Even though my life (and my family’s too) has changed a great deal, we try to carry on as normal as possible. My mom stayed home from work to take care of me for six months and was my primary caregiver. I have since gotten a lot better but, still am very weak and get exhausted quickly. The only activity I am able to continue is attending Girl Scout meetings.
I am so thankful to have such an amazing support system. I am also excited about Team Ame raising money for the Cure JM Foundation.
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