Myositis doesn’t stop me …..
Sadly, Jo Morris passed away in 2022 aged 31. She was an amazing young woman who lived a very full and spirited life despite the impacts on her body from Juvenile Dermatomyositis. Jo was a strong advocate for Myositis and for our Association. She is missed by all who knew her. This is Jo’s story.
‘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.’