Posted by xxnavyygirlxx on 4/22/2010 at 9:27 AM
I never realized hoe hard it was for someone with vison loss. I just found out yesterday that i hav macular distrophy, after months of research. I struggle and i hate it, I tell myself everyday that its something i have to live with and learn to live with. I am graduating in 25 days, and im struggling to keep up. I have to wear photochromic glasses and its hard to deal. Im trying not to break.... but can someone give support. or ideas of what to do....????
There are currently 5 replies
Re:Macular DistrophyPosted by Joe S on 4/22/2010 at 11:19 AM
I feel for you dealing with this at that point in your life. It is tough dealing with things that may affect your life during such a strenuous and exciting time.
I am guessing that you are graduating from high school, is this correct?
Did they tell you how much vision you have lost in degrees or percentage. Macular dystrophy typically affects your central vision or the macula where the highest number cone cells are in the retina. These is your reading vision and detail vision.
Doctors never know what the rates are for degenaration and can only make guesses. They are just guesses becauses each case is inidividual, even in the same family.
There are tons of great resources out there to learn about and take advantage of at this point. I think you are a head of the game because you have found AFB.org and our family of sites including AFB CareerConnect (helps explore careers and profiles sucessful people who are blind and visually impaired. You can contact these mentors through a safe annonymous manner, may have spelled that wrong.), FamilyConnect (aimed at parents and families who have children with vi), Senior Site (self explanatory), AccessWorld (online magazine that evaluates technology and such), AFB Press (all kinds of great publications), and you can search for the services in your local area on AFB.org through the directory of services. You should contact your state's blind services/vocational rehabilitation. They can help in many ways including rehab services, technology, medical referrals, funds for college, training for work, resources, and more. Please contact them!
Hadley School for the Blind is a free online school that provides all kinds of training through mail with large print/regular print, recorded, or online courses. www.hadley.edu.
Counseling can be a great help when dealing with a loss such as with vision. I am visually impaired, legally blind and only have like 2 degrees of vision (one percent or less). My vision hit hard at your age and had a lot to learn.
There are great tools out there to help with reading and utilizing your computer. Search our site and post with our users. Contact our mentors on CareerConnect as well.
Just trying to help!
Re:Macular DistrophyPosted by Music fan24 on 4/22/2010 at 8:33 PM
hello, i am a jenuior in highschool and i am leaglly blind i don't have the same eye condition but i will there as a friend to help threw this if you need it i cant see well enough to read print but i am just truing to help maybe you can find a vission or rehab center in your area.
good luck!! paulina
Re:Macular DistrophyPosted by Joe S on 4/23/2010 at 1:35 AM
Pualina would be a great person to converse with on here, she is a positive influence. I think anyone on here would say she is caring and offers good advice, as well.
Re:Macular DistrophyPosted by Charles_2012 on 4/29/2010 at 6:32 PM
I've been legally blind my entire life, but I've had verrying degrees of vision. Over last summer, I went from having the best sight I can remember to losing most of it in the course of eight months, so I know what you're going through. I'm a sophomore in a public high school, so people that knew me from last year now whisper behind my back. With so little time left in high school, I wouldn't worry about the social side of things, depending on the rate of decrease of vision. As far as the other advice, I'd have to back up what Joe said. As far as I know, everything he's said is true and he hasn't given me any reason to distrust him (not yet, at least). Just talk to any of us here and I'm sure we can help!
Re: Macular DistrophyPosted by Thrill Monster on 11/26/2012 at 6:59 PM
I'm sory you are going through this. My vision has stayed the same for 20 years.
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