Hello fellow Retinopathy Sufferers,
I’ve had Type 1 for 29 of my 30 years as of this month. I was diagnosed with severe proliferative retinopathy earlier this year in my left eye, which came on very suddenly and moved very fast. Although they’ve tried every treatment I’ve found on google, laser, vitrectomy, and anti-VEGF injections, unfortunately it seems my left eye doesn’t respond to treatment. I too am worried about driving, working, and mostly what could happen in my right eye. I know it’s possible in most states to drive with one eye and I plan to live somewhere with public transit anyway, but currently my left eye can still see some shapes and figures and my brain simply projects them onto my right eye, making the whole world seem double. My doctor claims he doesn’t know if that will get better or what to do about it…
I’m wondering if those of you that have posted before have any advice or any news on their own personal struggle with this complication, as I see many of you have asked before. I wish I had more information to provide, and if I do, I will put it here.
There is SO little information out there, even about vitrectomies themselves for those with type 1, particularly for those of us that are younger. My doctor didn’t even explain that if a gas bubble was needed there would be weeks of lying face down… I would love to find or make a support group, perhaps on Facebook, where we could discuss our issues, share our successes and disappointments, and begin to try and understand what this means going forward. Would anyone else be interested?
I’d even just like to compile a list of some common issues you’ve faced and common practices for treatment and outcomes that others who face this could read, i.e. descriptions of early symptoms, treatment experiences (laser, vitrectomies, the good and the bad, aids like chairs and bed attachments that my own doctor didn’t even know about…).
I’m going to Joslin in Boston next month for a second opinion, they’re supposed to be some of the best so I will update you with anything I learn and can share, so incredibly fortunate to have health insurance.
Thinking of you all, it’s comforting to know we aren’t alone but of course knowing what we are going through I wouldn’t wish it on anyone.