Trying to catch up here. Had a busy day. Lots to catch up on since coming back to Oregon from East Coast.
I saw your post on your Facebook group and I know the value well. I generally don’t do Facebook but belong to a group dedicated to the rare disease I have. I credit this group, with members all over the world, for keeping me on track and alive. The information shared within the group is invaluable. All questions are welcomed and answers given freely. We collectively know more about this disease than most of our doctors!
The hard part is getting to know members and then getting news when they pass away from this horrible disease.
Glad you found your group. Praying for your second surgery.
Glad to know you are safely home.
Just don’t over do it, always tomorrow.
Thanks Boston. Our experiences with orphan diseases sound a lot alike..
Through the group, I first realized what I had. And then I figured out the doctor to go to. Kind of the reverse of most situations. But without finding the group I never would’ve figured it out.
I’m glad you found the same sort of camaraderie. Helps a lot to not be alone
That was supposed to be Weston ;)
How sad that people die from the disease. That has to be hard.
With the neuropathy, it’s not fatal. But we have lost a couple to suicide, the pain is ridiculous. But we are lucky that there’s been research going on for 10 years. Are used to be that people were told they were crazy, they looked fine. At least there’s a way to diagnose and confirm it now. But most ophthalmologists are still clueless.