Eric, I  totally agree with you. The internet era, and sites such as this, have enabled this connection to happen for us. We, who once lived in total isolation from others with this condition, have found others.

I think it is such a pity that doctors who deal with these rarer conditions, haven’t by and large, made any attempts, in the past, to help connect people together. I think it is very healing. Without that connection, it’s possible to believe that you are the only person on the planet with that condition.

Good to hear from you.