Private Platform for Sharing & Support – your thoughts?
Dear Community,
My twin sister was recently diagnosed with Myasthenia Gravis, and it’s been an emotional and eye-opening time for our family. While supporting her, I realized how hard it is to find a truly supportive and understanding space — especially for people living with rare or chronic conditions.
I’m working on a small project to create a private, respectful online platform/app where people with MG, MS, POTS, and other conditions can:
- Share personal experiences (anonymously if preferred)
- Track symptoms or mood
- Join condition-specific chats
- Simply feel less alone
I'm still in the early stages and would truly appreciate any feedback — or just knowing if something like this would be helpful.
Would anyone here be interested in a space like that?
Even a quick “yes” would mean a lot. Thank you so much, and I wish you all strength and support on your journey.
Once she finds the correct meds for her (lots of adverse reactions to various MG medications), she will likely feel mostly normal, although it may be a bit of a roller coaster finding the corrects meds. I had a lot of adverse reactions to meds, but my MG side effects are now mostly related to strenuous activity. As long as i keep my activities on the lighter side, I feel pretty normal and can see, walk, talk, chew, swallow just fine. There were many days I could not do those things. Hopefully your sister gets to the same space in time.
Yes!
