The Invisible Disease When I was 6 months old my mom noticed that I had trouble bending my ankles. The doctors just wrote it off as growing problems. But when I was a year old, all the way up to when I was 18 months old, I was completely unable to walk. The doctors put me on all different types of meds, such as high doses of Motrin more often than necessary, and diagnosed me with all these different things, causing more bodily harm than should have happened. There was one simple blood test they could have run to save all this time and pain and damage, but they didn't because kids don't get Arthritis. That's for old people. The only treatment is to try and prevent permanent damage to the joints in hope that someday there will be a cure. Juvenile Rheumatoid (now Idiopathic) Arthritis is an autoimmune disease that among other things attacks the joints which would eventually become immobile. My mom would be more able to tell you about my early years, since she actually remembers them. But I will try my best. The treatments are very expense and include; • Intense physical therapy, which I underwent, for four years, 3 days a week, two hours a day. • Orthotics' (inserts in my shoes) for my feet, splints for my wrists that I wear as much as possible during the day and splints I wear at night. • Serious medications (such as Vioxx, Methotrexate, etc.) which work to suppress the immune system, but they are hard on a growing child and can cause liver damage, they also make me very susceptible to any and all infections. • Because Juvenile Rheumatoid Arthritis can also cause blindness I need to have my eyes checked four times a year. • I started a new medication in November of 2002 called Remicade the drug required me to spend a full day in the hospital every 6 to 8 weeks where I received an I.V. as long as the drug worked I did it, although the treatment is very expensive ($2,500 to $3,000) the results were nothing short of a miracle, though I was never able to have normal strength or endurance, and probably never will, I am able to do most of the things that a normal child her age can do • When I was 10 I was put on a new medicine, since the Remicade quit working for me. I had a terrible flare up and I needed a new plan of attack. That's where Embreal came into play. My mom has to give me a shot quite often, it used to be 3 times a week but not it is a high dose once a week. This keeps me going for the week until I am ready for my next shot. It is not any less expensive than the Remicade though. • Because of the serious nature of the various medications that help me live a normal life, my family has to watch me very closely since my meds suppress my immune system, and any virus like a cold, flue or Chicken Pox can quickly become very serious if we are not careful, the medication is also hard on my organs because of this I have a battery of tests regularly. So I have been put on many meds since my diagnosis. Many chemos and steroids that mess with your system in other ways. For the longest time I was living off of carnation instant breakfast and plain chicken because anything else would make me really sick. I would miss days, sometimes a week or two, of school at a time because I was unable to walk in the morning due to my arthritis flaring up. back - (Page 9) - next