Rare Disease Day Follow up

you offically know your disease is freaking rare when you know all the spokes people worldwide personally….

http://www.bbc.co.uk/ouch/closeup/rare_diseases.shtml

Scroll down about half the page and you will see Ms. Campbell. I was fortunate enough (as was BAXLEY) to go visit Alana two years ago. She lives in a beautiful little town on the Irish Sea.

Also the girl who wrote the article has Kniest. Emma. We have never met but she referred to me in her blog as a tall person with Kniest.

oh to be back in scotland…