‘PEOPLE HADN’T BELIEVED PAIN I WAS IN’
Teen diagnosed with rare muscle disease and arthritis
ATEENAGER who lives with a constant pain from a rare muscle condition and arthritis felt she had “lost everything”. Gabrielle Flower, 17, began to get aches in her joints and acute fatigue after a bout of Covid when she was 13.
She believes the auto immune diseases, which doctors told her would have come on anyway, were sparked early by Covid. For the next year Gabrielle lived in constant undiagnosed pain, with her parents taking her back and forth to doctors.
“I was an active 13-year-old, horse riding and going to the gym and suddenly I could not stand up properly, was aching and taking naps in the day. When I first went to the doctors they said it was growing pains and then, because the conditions affect your muscle mass, I kept losing weight and was told it was an eating disorder,” said the teenager, who lives with her family in Newport.
Gabrielle was so ill she missed nearly an entire year at John Frost School but managed to go back and get four GCSEs. She felt she had “lost everything” and began to believe it was “all in my head”, although she had clear symptoms of aches, stiff joints and chronic tiredness.
“It made me feel so down and I felt no-one was listening. I lost friends and got so weak I couldn’t walk, stand, or even have a shower without help.
“I was in tons of pain and feeling so stiff I couldn’t stretch out my joints to sit down or stretch my arms. I began to feel frustrated and angry.”
After a year of living in “isolation and pain” Gabrielle was put on an urgent waiting list and was admitted to the Noah’s Ark Hospital in Cardiff for tests. She burst into tears when a specialist told her aged 14 that she had juvenile dermatomyositis (JDM), a rare muscle disease affecting approximately three children in every million per year as well as childhood arthritis.
“I started crying so bad. I was in shock and speechless because you think of arthritis affecting old people. My step dad was there trying to hold back tears because people hadn’t believed me.”
Gabrielle was put on medication including chemotherapy drugs for two months. The pain eased but three years on she says she still lives with pain.
“The pain is not so severe and I can sit and stand and shower now. I completely stopped school for a year because of my illness.
“At one stage I didn’t want to take the medications and stopped taking them because I wanted to be a normal 15-year-old, then I got allergic to some of the drugs. Now I take anti-inflammatories but don’t take painkillers. I live in constant pain and it is exhausting.”
Asked what pulled her through, Gabrielle said she tried to “just keep going”. Her experience in hospital, and help from physiotherapy, has encouraged her to aim to train as a physiotherapist.
With support from a careers adviser and the Jobs Growth Wales programme – a training programme for 16 to 19-yearolds to help them gain qualifications and experience needed for jobs or further training – Gabrielle is now on a healthcare course with a local training provider in Newport.
“I will always have this condition because there is no cure. But I want to become a physiotherapist and I hope to get an apprenticeship.
“I just have to keep taking the medication to control my symptoms and I have physiotherapy and occupational therapy which also help. Physiotherapy means I can sit again, walk around and get in and out of a bath and shower.
“I have a social life again now and supportive friends. Having the diagnosis was painful but means I can move forward and I feel good now.
“Doctors said I had the gene for the conditions but I think Covid brought it on early. I had Covid when I was 13 and the aches and pains started about three weeks afterwards. I really think I was fighting for my life and felt no-one was listening at the start. But I feel good now.”