I’ve mentioned on the blog before that The Girl has Juvenile Idiopathic Arthritis or JIA for short and that we would like to raise some money to help find a cure. The Girl was diagnosed 3 years ago but we suspect she had suffered for about 12 months before the diagnosis came. Her knee was swelling and causing her to limp but there had been no obvious injury. The swelling kept coming up and down and after we toured Europe for 4 weeks over the Summer I booked an appointment with our GP as the pain and discomfort she had suffered whilst away had disrupted our holiday. We had seen our GP a couple of times before but with rest the swelling went down and no more thought was given to it.
The diagnosis to say the least was a shock. Shocking in that not only did she have JIA in her knee but also i both ankles and her spine. Many people think of arthritis as an old person’s disease but this is simply not the case. Osteo Arthritis or wear and tear on the bones is usually seen in the elderly but JIA or in it’s adult form Rheumatoid Arthritis can strike at any age. RA and JIA are auto immune diseases. The body is fighting itself. The disease can run in families. I too suffer from RA and it is believed that I had in fact suffered from around the same age as The Girl. Back in the 70’s I was told I had growing pains. The pain came and went and I was told to get on with things. In my late teens I was diagnosed with another auto immune disease and started taking medication. The Doctors think this helped me and all symptoms went until a few years ago when I had to stop taking one drug due to nasty side effects. Days later I couldn’t walk for the pain and my joints seemed to double in size over night. This is when my RA was diagnosed.
Here in the UK 1 child in 10,000 is diagnosed with JIA every year with 1 in 1,000 children having a diagnosis. That is a large number of children in pain on a daily basis because of an incurable illness. JIA is defined as inflammation in one or more joints for at least 6 weeks in a child under the age of 16. The inflamed joint’s are often swollen, warm to the touch, lost normal range of movement and stiff in the morning when the child wakes. From experience of both The Girl and myself, this stiffness can last a number of hours and can cause much discomfort.
The Girl has numerous medical appointments; GP reviews, Hospital Consultant, Physio, Eye Consultant, Occupational Therapy, joint injections. Regular blood tests and twice daily physio exercises lasting 30 minutes a time. The list seems endless. One thing that a lot of people don’t know is that the disease makes you very tired. It’s hard being a 10 year old at school and normal tween activities without feeling tired and fitting in physio exercises.
I don’t want to see that look on my little girl’s face ever again.
The tears in her eyes, bring tears to mine and my heart breaks over and over.
I’d like to take away all the pain, tests and treatments that go with this incurable disease.
But most of all I’d like to see a cure.
But research is needed and that costs money.
The Girl and I are trying to raise some money to help fund this valuable and much needed research.
Money that will help to see this smile on her face all of the time.
We have a Just Giving page here.
To help reach our target during the month of April I am donating 10% of sales (before p&p) from my Etsy shop to our Just Giving fund raising. Please help us reach our target by donating directly or making a purchase this month. Any contribution is most welcomed.
Thank you from both of us and to those already who have contributed it’s really appreciated.
More information about JIA and RA can be found here.