I woke up when I was 10months old with a sore knee and within 2 weeks could no longer move my limbs or be touched as it hurt all over. I was in and out of hospital for 6 weeks before they diagnosed me. I suffer daily from swollen and stiff joints as well as rashes, high fevers, red face and nasty side effects from my medication. I have to avoid direct sunlight as the steroids and chemotherapy tablets I am on make my skin prone to burning to the point of melting, the medicine also makes me bloat and it is very strong. I have a very weak immune system as arthritis is an autoimmune disease as well as my medications being immune suppressants, so I get sick a lot and I have to be very cautious when we are out not to share anything with other people and to avoid anyone who might be sick as my body doesn’t have the ability to fight the germs. I have been hospitalized 4 times this year from complications due to normal childhood illness, most recently I was hospitalized due to a common flu which turned to systemic infection causing me to have convulsions and hallucinations with severe temperatures.
My family and I had to move from the coast to Sydney so I could be close to the wonderful doctors and constant treatment but we have since moved back to south west rocks as living in Sydney seem to make my health worse and the Dr said it was due to overpopulation and high germ factor. As well as my daily medication I have steroid injections every 4 months to all my joints via day surgery to help me get movement and some comfort, I try and be brave but its scary!! Its also hard on my family seeing me so sick and scared as well as being very costly as the government doesn’t fund juvenile arthritis and Centrelink said they don’t recognize my disease yet, it costs my mummy and daddy around $1000 a month for all my treatments and medications. I also have to have fortnightly blood tests which is a battle as I don’t like it and my arms are scarred from having so many needles making it hard for the nurses to access my veins the only thing i like is the wiggles band-aid at the end. I have to have my eyes checked with the ophthalmologist every 8 weeks to make sure my eyesight isn’t diminishing which is a common occurrence linked to arthritis which recently has been giving me problems with vision in my left eye making it hard for me to see.
The doctors can’t give me a future prognosis and there is no cure we just have to take day by day and hope the pain isn’t so bad. We appreciate all your support and kind donations which go towards the costs of my medical treatments and the travel expenses to and from the hospital in Sydney.