|
I am an 11-year-old girl. My disease was diagnosed in May 2006 in a private hospital. I had been suffering from high-grade fever for more than a month. I had severe aches and pains along with fever and also joint pains. In between I used to get rashes with the fever. I had to give so much blood for the reports then as my parents tell me that I was variously diagnosed as typhoid, malaria and even tuberculosis and on the 30th day of admission; a specialist was called who finally gave the diagnosis of Still’s disease. I had to unnecessarily take so many medicines for other conditions till then. Then I realized that it was some arthritis disorder and thought I will be fine after some time.
With the use of initial medicines, I felt better, after a month, the fever had finally subsided and I could walk around and play. At the first visit after admission, the doctor who had diagnosed explained to me and my parents that I will need to take treatment for at least 6 months. Although it seemed a long time to take medicines since I wanted to play like my friends without taking medicines continuously, I did not want to return to the original condition with so many injections being given and blood being taken out and so I agreed to take them. The joint pains during the fever episodes were very severe and I couldn’t even bath myself or take care during the same and I was scared of the attacks of arthritis. I took the medicines for 8 months then and became absolutely fine and so they stopped the medicines and I thought I was cured of the disease and could freely play and go to school like my friends.
To my hard luck, I again got a similar attack in April 2009. Again this started with high fevers with chills and joint pains very severe pains and I had to go to bed when I had the attack not being able to do anything. I used to get rashes again. Again the blood reports repeatedly and injections but this time the doctor knew the diagnosis and so started treatment again. But, still I continued to get fever, although less than before and joint pains. I was still not cured of the disease. We continued medicines with the doctor for quite some time repeatedly going for visits, blood reports and I dropped from school as I was always sick. Could not play with my friends and most of the time hardly could take care of myself.
We went to a higher center for further treatment. My father had to repeatedly take leave from his business to come with me and so also my mother and I was advised a monthly bottle to be injected into me initially for 3 months. I thought I will get cured in 3 months and then will be able to play and attend school. But this time, it lasted for very long and I was not able to stop the bottle. It is now 3 years since I have to every month take the bottle. I also think it is a costly medicine. I still have to take medicines with it but I was better with this bottle for the last 2–3 years and only occasionally got fever and joint pains.
I am now tired of taking these injections for the last 3 months stopped it and I again got high fever and joint pains and rashes. The disease does not seem to leave me at all. I have not been able to go to school like my other friends. Instead my teachers come and teach me at home and I even take my exams from home sometimes. I do not like it and wish to go to school like others. I also am not able to play well as I can’t bend my wrist and elbows like my friends. I also get lot of side-effects of the medicine. I want to be free of medicines or at the most take one or two tablets that can keep me going.
I wish the doctors invent such a new medicine that will help a lot of children like me who suffer from this disease.
Thank you
NP
|
