Rare Disease and Isolation

https://globalgenes.org/raredaily/how-isolation-impacts-those-suffering-with-rare-disease/

I can related to a fair bit in this.

In some ways I am lucky, I have medications for my condition that work pretty well for me. There is a national organization and research is being done - when I was first diagnosed there was 1 HAE specific medication available in Canada and now there are 3-4 (availability of the 4th is questionable even though it was approved before my diagnosis. I have heard it became available this year after a global shortage but I hear from others they can't access it).

It took me over 30 years to be tested for HAE. I was lucky and had a specialist who was on the lookout for this condition even though it's not something he could officially diagnose or treat. My GP at the time who I really liked and respected wasn't familiar with it and she had to do the referral and was clueless where to send me - I had to refer to a letter from my specialist that I was lucky to have a copy of, as the one that was sent to her was lost.

I frequently deal with doctors who want to treat my condition incorrectly as they don't really know what it is, they are just familiar with the symptom of angioedema which is much more commonly due to an allergic reaction.

I often feel frustrated or annoyed by campaigns for common diseases, especially when they are to raise awareness. Locally almost everyone is aware of them already! On HAE Day I don't hear of much going on outside from the HAE specific groups. Nothing locally. I don't care if the average person on the street is aware but I wish more doctors were!

I think in general, many of us with rare diseases are able to connect to others better now than in the past thanks to online groups.

What has your experience with a rare disease been?