Stargardt's (Juvenile Macular Degeneration)

By chuck

2 min read

I know this is not a story about age related macular degeneration, but I thought I would share - hope you all don't mind.

Remedial reading classes

I am not about to be 70 years young in November. When I was in grade school, my grades started to decline. The nuns did not take that well, along with my mom. In my heart, I know she really did not mean it but it still hurt. The word "stupid" started getting used a lot. That sucks. It was decided that I would be sent to remedial reading classes.

After being there for a time, the teachers told my folks that my comprehension was fine and suggested that I might need glasses. I went to an eye doctor that did just that. Gave me glasses - glasses did not help. I went from "stupid", to "stupid and lazy", and continued remedial reading classes to which they said my comprehension was fine and that I needed better glasses and a better doctor.

A bombardment of tests

Doctor Glenn in the Highland Building in the East End of Pittsburgh, PA was recommended. So that is what we did. I went through a bombardment of tests - ouch - ya know? After this doctor told us that I have a problem in my retina, and sent me to a retina specialist. He also said that by the time I was 16 I would not see well enough to get my driver's license. He said that I would be legally blind.

The look on my dad's face is still stuck in my mind's eye. I was around 12-13 years old I think at the time. Well on to the specialist in downtown Pittsburgh, PA for another bombardment of tests even more intense than the first ones. Dr. Gattos' diagnosis was right.

Playing sports

At the age I was, it really did not sink in. I kept doing all the things that a young guy does with his friends. No baseball - tooooo fast. Lost the ball in mid-flight not wanting to tell anyone of the other guys. They just thought I was an awful baseball player.

So that was the end of that game for me. I did not really care. I liked the pick-up game of football we all used to play (I could see that football), haha! I could of on, but all you asked for is my story.

Stories of living with Stargardt's

In the fifty-plus years of living with Stargardt's (juvenile macular degeneration), I got some stories. Some funny, and some not so funny.

Oh yeah, I was drafted in 1970. I went there for my physical and I had a note from my eye doctor. I went through the whole routine. The eye test was near the end. Even with the note, they checked out my vision. No need to say that army did not want me.

If you read this, I hope this was not too boring.

Thanks,

Chuck

Have you been diagnosed with Stargardt's disease?

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abbyschmidt Community Admin
Chuck - I loved reading your story. I'm sorry to hear that it was such a long, emotional process, but I'm wondering how you're doing now? How are you coping? We'd love to hear more of your stories - both funny and not funny! Thanks for being a part of this community. Best, Abby (Team Member).
Sharon Moore Moderator
Chuck your story made me very sad for the little boy labeled stupid and lazy. In spite of your painful experience your sense of humor is intact. I would love to hear more about your experience. Best wishes, Sharon Moore advocate
chuck Member
HELLO --Sharon I NAVE NO IDEA HOW LIVING WITH STARGARDTS IS SUPPOSE TO BE --BECAUSE I DO NOT KNOW OR EVER MET ANYONE IN MY SITUATION ----MY BROTHER 8 YEARS MY JUNIOR HE WILL BE 62 --AND I WILL BE 70 THIS YEAR HE HAS THIS CONDITION BUT DID NOT START LOSING HIS SIGHT UNTIL HIS LATE 30tys- SO HE LIVED A SIGHTFUL LIFE UNTIL THEN --BUT IT WAS STILL DIAGNOSED AS STARGARDTS ----MY EYE SIGHT IS 20/200 OR WORSE AND I ONLY HAVE BITS AND PIECES OF SEEING WELL THAT WILL POP INTO MY HEAD SOMETIMES FROM MY EARLY YEARS ---------I HID MY CONDITION AS MUCH AS I COULD -EXCEPT FROM MY CLOSE FRIENDS AND ONCE I GOT INTO HIGH SCHOOL AND HAD BEEN DIAGNOSED MY TEACHERS NEEDED TO KNOW OF COARSE ------BECAUSE PEOPLE CAN BE WEIRD WHEN IT COMES TO THINGS LIKE THIS -----IT WAS ON A NEED TO KNOW BASIS FOR ME --IN MY YOUNGER YEARS -I WOULD GET MAD IF THE SUBJECT CAME UP ---SO IT ALMOST BECAME TABOO PROBABLY NOT A GREAT IDEA BUT THAT IS HOW I WANTED IT TO BE----AT THE AGE OF 16 MY FRIENDS AND I GOT JOBS AT A LOCAL COLLEGE CAFETERIA --WE ALL HAD GO GET WORK PERMITS --WHICH INVOLVED A PHYSICAL-- WELL IT ALL WENT WELL UNTIL THE EYE TEST --I FAILED -AND THE LADY THAT GAVE US THE EYE TEST -CHUCKELED ABOUT MY LACK OF SIGHT -SHE THOUGHT I JUST NEEDED GLASSES--- NOT HER FAULT SHE DID NOT KNOW---- HECK THEY MADE A CARTOON OUT OF NOT SEEING WELL -IT IS A MR MAGOO THING WHEN YA CANT SEE WELL SOME THINK IT IS FUNNY --(NOT)----WELL BACK TO MY STORY --- I HAVE HAD SOME GOOD LUCK CONCERNING MY CONDITION OVER THE YEARS-THE WORK PERMIT FORM WAS DONE IN PENCIL --SO BEFORE IT WAS OVER SEEN BY WHO EVER ---MY BUDDY HOWARD TOOK IT AND ERASED THE ONE ZERO YA KNOW --INSTEAD OF 20/200--IT WAS 20/20 AND I GOT THE JOB --OTHERWISE I WOULD NOT HAVE ---I WOUND UP WORKING THERE THROUGH THE REST OF HIGH SCHOOL AND TRADE SCHOOL---I LIKED THE JOB AND THEY LIKED ME ---TO GO ON ANYMORE I MIGHT AS WELL WRITE A BOOK--- AND I THOUGHT ABOUT IT --BUT HAVE NO IDEA HOW -- I GOT A NAME FOR THE BOOK ---------------------------------------------------((( THE BLIND GUY THAT SAW EVERYTHING )))---LOL----LIKE I SAID BEFORE I GOT SOME FUNNY AND NOT SO FUNNY STORIES RELATED TO MY CONDITION -----------THANKS FOR YOUR INTEREST Sharon
1. Sharon Moore Moderator
 Chuck thank you so much for sharing details of your live with Stargar dts. You have had many difficulties due to your condition but you have not lost your sense of humor. Here is a link to an article written by one of our advocates that has the same condition. <a href='https://maculardegeneration.net/living/support-systems' target='_blank'>https://maculardegeneration.net/living/support-systems</a> You probable could write a book about your experience. All the best, Sharon Moore Adcocate .