JDM – A Parent’s Perspective – Patient B

My son has JDM. He was diagnosed in 2009 when 8. As his mum I believe it started with a rash on his fingers that wouldn’t go away when he was 5. I took him to a GP and got a script for 1% cortisone cream as he thought it was Dermatitis. He was normal all the way through Grade 1 playing his 1st season of Basketball. When I think about how it started I remember all the little things and wished I had done something earlier.

Early in 2009, I took him to see a physio whose name I got from a mum at playgroup. He told us we needed to see a GP and get a referral to a paediatrician but didn’t say what the condition was. The physio gave us some stretching exercises to do. On the 2nd visit he also typed up a letter for us to give the GP which I did but he looked at it and didn’t really say anything but gave me a referral anyway. On a follow-up visit to the physio I had made the appointment with the paediatrician but there was a 2 ½ month wait. The physio told me not to wait long, so I rang and got an appointment for 2 weeks later.

The paediatrician took his time with us while assessing my son. A friend had told me to write down every illness since he was born and to also include small things like constipation and other things we noticed that had changed, such as him not being able to walk up stairs, not being able to throw a Basketball and unable to sit on the floor cross legged. The paediatrician said there were 3 possibilities and he thought it was JDM but needed a blood test. We were very lucky he was the paediatrician who was rostered on for my son’s birth as it just so happened he had done his exams with another Dr at the Children’s and had rung him for advice. The next day I got a call to say we had an appointment at the Children’s a day later. I was worried as doctors don’t ring unless it’s urgent. It didn’t help when we got there, to find there were 4 doctors attending the appointment. It’s the practice they follow so that all the doctor’s from Rheumatology have seen the patient at least once. We started treatment the following week. By the 3rd month he could sit and ride his bike.

I didn’t look JDM up on the internet but relied on the staff at the RCH, I was too scared to. From Jan 2009 to being diagnosed in June 2009 the disease seemed to progress quickly and there was nothing I could do. I’m very grateful to my physio for advising us to seek a paediatrician. If I’d had to wait those extra 2 months ??????

Currently my son, who is now 13, is having IVIG infusions monthly and seems to be doing fine. The rash is back but now he is older he won’t take his medication and that’s hard as he just doesn’t see that by taking it he could put the JDM back into remission. He doesn’t like to admit he is sick or deal with it at home but is quite happy to go to the Children’s, have his treatment and eat McDonalds. I thought it would be easier as he got older but he makes it hard. He didn’t want to take the Methotrexate tablets so we went with the injections and but as soon as I got the needle out of the cupboard he would vomit. I now nag him that his health is his responsibility and I can only do so much and he has to do the rest, which is basically admit he is sick and do what he has to do to make it go away.

Copyright 2014 – The Myositis Association – Australia Incorporated

pagesplitter

My Life After Juvenile Dermatomyositis – Patient J

I was diagnosed with Juvenile Dermatomyositis (JDM) in 1995 at the age of 6.

I used to play football with my sibling in the back yard every afternoon after school and, on the weekends, I’d get in the boat and go fishing with my dad. It was hard to keep me still.

Because I was such an active child, my mum knew something was wrong with me straight away when I complained of being tired all the time. I saw many GPs over several weeks, each one saying I just had a virus and the symptoms would go away in time. My mum didn’t believe this and knew something else was wrong.

She pointed out the “butterfly rash” I had on my face. The GPs told her it was just sunburn. My mum knew it wasn’t.

By this time I was also suffering from aching joints. The GPs dismissed these as growing pains.

Each GP said the same thing after the other. One even told her she was an overreactive
mother and to stop wasting his time.

My mum didn’t give up. She finally found a GP who agreed there was something seriously wrong with me. I was referred to a specialist and, the following day, I was admitted to hospital. After several blood tests and a muscle biopsy, I was informed I had Juvenile Dermatomyositis.

I was unaware at the time that the diagnosis was the eary part, but the battle that was ahead of me to fight the disease would be the hardest part of all.

After weeks, months, and years of treatment, the disease was getting worse. Even with the high does of prednisone and constant physiotherapy, my muscles became weaker each day. While I got weaker, the disease got stronger. I wasn’t responding to treatment, only its side effects. The JDM was winning.

Because my case of JDM was so severe and because I wasn’t responding to any of the available treatments at that time, the doctors were out of ideas. They informed us there was noting else they or we could do then and to let the disease take its course.

I’m now 22 years old. I have severe muscle loss and I’m completely wheelchair bound. But that doesn’t stop me! Maybe I can’t play in the back yard or kick a football any more, but that’s ok, because there are many other things I can do even more. If it hadn’t been for JDM, I may have never discovered my talent for painting. People say things happen for a reason, maybe the disease leading me to paint is mine.

Painting means the world to me. I’m grateful each day to be able to pick up a paint brush. I think it’s more important to be grateful for what you can do than being angry with what you can’t. JDM may have left my body weak, but I’m a much stronger person because of it.

PATIENT-JOURNEYS-9
Copyright 2014
The Myositis Association-Australia Incorporated

Juvenile Dermatomyositis in Remission! – Patient L

I was diagnosed with Juvenile Dermatomyositis (JDM) when I was three years old.

Prior to getting JDM, I was a healthy, energetic and active boy. It started off as a rash around my face and soon my muscles became very weak. It wasn’t long before I could no longer walk and could not perform simple tasks such as being able to dress myself. I was on two forms of medication: prednisolone and methotrexate.
Over two years, I learned to walk again and recovered. I have been JDM free and medication free since 1990. Every year gets a little better and I get a little stronger. I’m now enjoying great general health. In the years since having JDM, I have graduated from university and travelled overseas. I’m now actively involved in helping others with Myositis both in Australia and internationally. In my spare time, I’m also an aspiring musician.

Copyright 2014
The Myositis Association-Australia Incorporated