Amanda

Hello, My name is amanda. I have had uveitis for almost 6 years. When I first felt symptoms of it I was laying in my parents room and I felt a sharp pain in the back

of my eye when I looked up. So we went to the local eye doctor to have him look at it. He didn’t know exactly what it was so he sent us to a specialist. The specialists name was Doctor Cohen. He said that my case was serious and very rare in children my age. I

was only seven at the time. He said I needed to be put on a steroid eye drop and a dilation drop that I would take every two hours. Being in school that was very hard. I had to wear sunglasses whenever I went outside and the other kids would ask me questions that I

wouldn’t have answers to. After a few weeks of going to the doctor and taking the drops I was allowed to take the drops three times a day. After years of

check-ups and drops I now understand uveitis a lot better. My dad has sariasis(psoriasis)- a non contagious inflammatory skin disease characterized by recurring reddish patches covered with silvery scales. Some doctors think that sariasis(psoriasis) is related to arthritis which was passed on to me by genes. I am not diagnosed with arthritis but I do have frequent back and joint pains. I have exima(eczema) too but I don’t know if that has

anything to do with uveitis. Doctor Cohen has saved my eyes and literally my life. I thank him deeply.

I don’t know if you put kid’s stories on your web site but I think mine can answer some people’s questions. I will probably have uveitis for the rest of my life. Whenever I stop taking the steroid drops, the inflamed cells come back. I hope we find a cure for this soon because

the steroids are damaging my liver. If more doctors get the idea out there that kids can be heard I think more of them will speak up. When my doctor said that my case was very rare, I didn’t think that anyone my age had uveitis. I was wrong. If someone started a

” Uveitis Kids of America” group, I would be the first one to join it. I just want my story to be heard. I want someone to know.

Editorial Comment: This child innocently mentions the damaging causes of chronic steroids. The standard of care in Uveitis is to move off steroids when it is clear as the child states above “whenever I try to wean off them, the inflammation comes back”. This is a case where the step-ladder approach to care is needed. The goal of treating uveitis is no inflammation, off steroids, on medications that will lead to remission. Remission is no disease activity off all medications. You need not “have Uveitis or ocular inflammatory disease all your life” as this child expects with the step ladder approach to care.

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