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New to group and going blind
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Hi, I'm new to this group. I was diagnosed at age 12 with Stargardt's Disease - a rare type of maculatory degeneration. I've spent the majority of my life dealing with being legally blind, but believing that I would never loos all my vision. But this past November while having a checkup, I was told that I didn't have Stargardt's. Instead I was told I had Cone Rod Dystrophy, which is similar to RP, from what I understand. So now I am losing much more of my sight and having to face the definite possibility of total blindness. I'm struggling with what plans to make for the future as I am presently a sculptor and art teacher and teach exercise classes - things that I know will get harder to do as my sight diminishes.
I've spent most my life proceeding as though I don't have a disability, but now I think the gigs up. You can't hide a cane or seeing eye dog. I'm having the hardest time breaking the news to my friends for fear they will start to pity me.
Is there anyone out there who has Cone Rod Dystrophy? Or anyone who is willing to share their experience with going blind?
Posted on 02/23/12, 05:35 pm
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Reply #1 - 02/24/12  11:41am
" i have lived my life w/ legal blindness due to ROP.
8yrs ago I was diagnosed w/ Glaucoma. I do live in fear that one day I will wake up and not be able to see my son's face. But I don't let fear take over my life because i know i am more than y blindness, that I have purpose and value. I am sorry to say that u will come across people who do pitty u, why> because they are ignorant. I don't mean that to sound rude, but the fact is that explaing how we feel to those who can't relate is difficult. That saying that until u walk in my shoes, u won't get it applys here....
What I can say is there is hope. God doesn't create junk and u were created for a purpose, to show that u r more than just blind, that u have a uniqueness about u that can't be forgotten or taken. That there is life within being blind. U just have to find new ways to do things and different ways to relate. Not bad just different. Find the little things to be grateful for and build on them. Go boldly and inspire:) "
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Reply #2 - 03/07/12  9:03pm
" Keep in mind that there is always new things coming out to treat these eye diseases. I was diagnosed with angiod streaks and was told 6 years ago that I was going blind. I now have a new Dr. and he has been treating me and done surgery on me and I have improved greatly. There is always hope. I am a hairdresser and I always thought if I lose my sight, I would become a massage therapist. You don't have to see to give a massage. That keeps me going. Good luck "

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