Hello, my name is Stephanie. I live in Northeast Ohio and I was recently diagnosed with an autoimmune retinopathy. Aside from the vision loss, photophobia, halos and eye pain (lol) my biggest complaint is lack of information! It's driving me crazy. I have seen so many doctors and I get the feeling that no one wants to deal with this. In fact, the most recent doctor I saw told me that's exactly what it was. Even saw a doctor at the world renowed Cleveland Clinic and he passed me off. This is frustrating because while all these doctors pass me around and poke and prode me like a science expirement, my vision gets worse. I have not worked in over a year, am now legally blind and lost in the social security system.
I found this website while doing research at the local library and began crying seeing so many similar stories. I'm not alone! Not that I would wish this on anybody, however, until you've been through this, you can't understand it.
My most recent doctor has passed me off to a retina doc and rheumotologist for "chemotherapy" because I am "outside his area of expertise" which is VERY concerning. How can you treat, or even recommend treatment for something you don't understand? And not just any treatment, but chemotherapy?
Anyways, I'd really love to hear from anyone who has even heard of this diagnosis and if you know of a doctor who considers this their "area of expertise" I may just love you forever!
