I Have a Rare Disease

Today I met with a few other patients and their family. It was great to exchange experiences and the location was perfect for a group meeting. We met at an all inclusive indoor and outdoor activity park. After the entrance fee, everything else was free: a buffet with soup, bread, salads, pizza, pancakes, deep fried snacks, drinks and ice cream. It was busy enough for everything there to be no older than 10 minutes and yet none of the areas was ever empty. And for the kids there was about a square mile of activities like forst obstacle courses and midget golf. The advantage of a buffet was also that people keep walking around, so you don't sit next to the same person all afternoon but get a chance to talk to everyone.

But besides having a great day with socializing and delicious food, I learned a couple of new things about my disease too. Someone even mentioned a way to get my (still experimental) meds covered by health insurance.