Hey guys! My name is Adam. When i was a 1 year old i was diagnosed with Retinoblastoma and had to get my left eye removed. Im just lookin for a community!
claudettemonet4 points7y ago
They let me hang out and I'm not even legally blind yet. So, pretty sure you're totally welcome.
fastfinge3 points7y ago
Of course you're welcome! From our community description:
> A support and discussion community that welcomes people who are blind, visually impaired, those who work with the blind, and those who are just curious.
We've got blind folks, visually impaired folks, and sighted folks. Everyone is welcome!
rumster2 points7y ago
RIGHT ON BROTHER!
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Unuhi1 points7y ago
Why not - welcome 😎
Marconius1 points7y ago
I don't see why not, I lost my left eye to retinoblastoma when I was 15 months old. Unfortunately all the radiation treatments I had to save my right eye caught up with me two years ago, and seems to be a current running trend amongst those of us who had radiation in the mid-1980s. Or at least those of us who had a bilateral case, some form of retinopathy is bound to happen later in life.
mee14x [OP]1 points7y ago
sorry to hear. what do you mean by caught up with you??
Marconius2 points7y ago
I developed a cystoid macular edema in 2010 because the blood vessels in my retina were leaking, a long-term side effect from the radiation I had back in 1986. Some of the doctors at Stanford thought that the cancer had returned or had come out of stagnation, and I ended up visiting Dr. Abramson in New York at Sloan-Kettering, Who is one of the worlds top retinoblastoma research doctors. He explained the leaking blood vessels and the effects of the radiation, and I came back to California to undergo treatment to fix the vessels. The treatments didn't really work and I ended up getting an internal infection that required surgery to fix, and a month after that surgery my retina detached. Changed doctors, and it turned out that some simple laser treatments solve the original edema problem, but the damage was already done with The failed detachment surgery and a year later I had to go in for more surgery since it wasn't getting better. Every surgery I had from then on had a complication, and basically four surgeries later my eye just sort of gave out and threw a blood clot in the main artery that feeds the retina cells. The radiation treatments and time had hardened that artery and made it susceptible to clots, which was something no one considered until it actually happened.
Get your remaining eye checked regularly!
0mgitsrachel1 points7y ago
Hey! I had retinoblastoma too! I was three and I lost my right eye. I had radiation in my left eye, and as a result, I had a cataract when I was 8 and a detached retina at 26. My cornea never healed from that retina reattachment surgery now my cornea is super thin and we are trying to keep it stable but yea. I'm 32 now and legally blind in what was my "good eye"
Do you enjoy showing friends your old prosthetic eyes? Cause I sure do!
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