Sunday, November 23, 2008

Stop with the Never Ending Tests

Anyone who's been sick knows the annoyance of running countless tests. The frustrations of feeling like you're a lab rat. I still remember when I was around the age of 9, all we knew was there was something wrong with my eyes but no one knew what it was, no one was able to explain why my sight was deteriorating.

As a restult, my parents took me to see "expert" otimologists. I must have went through maybe a hundred or so optimologists. I remember there was even one time where I was exaimed by a group of students as a "live case" of Stargardt's. From a medical/scientific standpoint its all well and good that people should be more exposed so they can become better doctors, but from a kid's point of view, it made me feel like a lab rat. What made it worst was even with all these exams and tests, they still could not be completely certain that my condition was Stargardt's. It wasn't until when I've lost most of my vision adn that my retina started showing signs the "dots" that they finally concluded Stargardt's Disease.

Not knowing is the worst feeling in the wolrd. But knowing that there was NOTHING I could do made things even worst. The most common phrase i hear from optimologists is "technology is improving, there might be a cure soon in the near future." I always hated hearing that from people, sometimes false hope is the worst thing you can do. Perhpas its my personality to be a realist, I believe in facing reality and not hoping it would somehow miraculously improve. Personally, if I had put my hopes in that someday my eyes will get better, I would probably never accept who I am right now. I'm not sure if other patients think the same way so I'd love to hear from some of you out there.

Just the other day, I went to another optimologist, did some more exams. As soon as I walked into the clinic, I wanted to walk out. I kept seeing "doctors" or anyone who claimed might be able to help, all because my parents still don't want to "give up". I know theymean well, but if you're a parent of a SD patient. Stop trying everything you can get your hands on, its tiresome for us. This is not to say don't go to checkups or keep up to date on new developments, but just don't go running around trying to find a cure. There isn't one, probably won't be one for decades to come.

My best advice is, see a few experts, understand what kind of treatments are available (eye drops, supplements, etc) whehter you choose to take them its totally up to you. Don't go chasing doctor after doctor, if anything, understand what options you have in terms of aids. We are already quite lucky in terms of the technology avaialbe to help make our lives easier. There are magnifiers, GPS locators, enlarged print and audio books, and so much more.

Help your child understand and learn that although they cannot see like normal people, they can still learn and do many many things the same or better than other people.

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