How it started for me?
As I always say, this is my experience, may not be the case with everyone. I'm writing to help those better understand and be aware of things that may be applicable to them.
My vision started to deteriorate by the age of 9, I had lost most of my central vision by the age of 13. The loss of vision is overwhelming to any child growing up, as if the identity crisis of an average tween isn't bad enough, Stargardt's is like pouring gas on top of fire. For the longest time, I dreaded the fact I was alive, but I couldn't bear to hurt myself since it would likely devastate my family. Sometime I'd almost wished something would happen to end all that misery. It's not a pretty place for a child's state of mind to be in. And if I had to guess, that is likely triggered some of the other health problems I eventually had.
Health Issues
My guess is the "semi depression" states I went through began to affect my body in invisible ways. I gained weight, eventually diagnosed (after 15 years) a chronic case of sleeping disorder known as narcolepsy, and hormonal imbalances cause sing other complications. OK I'm not saying that people with stargardt's will all have these problems, I'm saying that the emotional ramifications of losing your vision may likely trigger other unforeseen health issues. For myself, the depression like states probably kicked my body into autoimmune like status where slowly my body is killing itself.
I'm a strong believer in the body mind connection, I believe how your feel and think has tremendous impact on your body's immune system. And even scientifically we know it has a direct correlation.
So what am I trying to say?
These emotional episodes may have serious lasting effects on your body. For me, I'm trying to undo at least a decades worth of emotional baggage that has taken a toll on my body. The bright side of it is, yes you can do something about it, and no its never too late. But like everything else about having Stargardts, things are just a bit more harder and complicated than "normal". If anything, I would say you have to untangle the emotional mess before you can reverse the physical ailments.
How do you get through the emotional mess?
One day at a time. I'll write something on this topic another day.
Posts
Thank you for the post. I also have Stargardt's, first arising around age 9, it seems similar to your experience. I went to the optometrist's to get a pair of glasses like any normal kid who was squinting when reading a blackboard, and ended up with an incredibly rare eye disease. Your description of things you went though seems very similar to my own experience. I have been fortunate not to have any direct physical issues, but it's heartening to hear that other sufferers go through similar bouts of mental/emotional distress. I had just assumed my occasional bouts of self pity and anger were a sign of personal weakness, but I guess it is expected after all. It is difficult to explain this to `normal' people. It is just very frustrating dealing with all the issues and problems that come up, especially the loss of independence. Anyway I will continue reading your other posts.
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