I was diagnosed with Juvenile Dermatomyositis (JDM) in December of 2014. So, to help you understand; Derma, is skin and myo is muscle and sitis is inflammation. I have to take injections of Methotrexate once a week and when I was first being treated I had to take prednisone for 4 months. It is not fun sometimes and sometimes I wish I did not have to take the medicine at all. I am lucky though, it does not give me as many yucky side effects as other people get with it. And I have not had to do some of the other hard things like IV treatments or hospitalization. I do have to get 6 viles of blood taken every 2 months to make sure the medicine is working and not doing bad things to my body as it is working to help me.
My sister Nadine is now also being observed by the Rheumatology department at BC Children’s hospital and she is presenting with Juvenile Rheumatoid Arthritis symptoms. The preliminary blood work has come back positive with some form of disease activity but it may be nothing or something, we don’t know yet. She had lots of x-rays done. I have already had 2 MRI’s so the doctors can help me better. I hope she does not have to start taking the same medicine as me. I kinda miss my mom dates at the hospital because now I have to share them with Nadine.
The JDM I have can be life threatening (because the heart is a muscle) or it can cause life long problems when untreated in children and even when treated it can still cause life long problems. Mine, and Nadine’s possible diseases both fall under the head category of Juvenile Idiopathic Arthritis (JIA).
I am so thankful for Cassie and Friends who are working hard to bring awareness and raise money for research on how to better treat this disease in children like me.