I love the perspective of this article:
http://www.bloomberg.com/news/2012-01-23/biomarin-s-dwarfism-medicine-marks-growth-of-400-000-rare-disease-drugs.html
Petite yet fierce - Ramblings of a pathologically information hungry mother about hypochondroplasia, about rearing 3 girls in a foreign country and about all the random thoughts my sleep deprived and over-stimulated brain can come up with.
My daughter and I have been enjoying your blog. She has a public facebook page (ChandlerInBaltimore) where she chronicles her limb lengthening experiences. She has achondroplasia and is currently lengthening her arms, she has done her legs once, and will likely do her legs again in May 2013 with the new Precice internal device. She would love it you would like her page :)
ReplyDeletewww.facebook.com/ChandlerinBaltimore
She has a few pictures of her friend Annie who is hypo and also lengthening.
She is 18 now, but your blog brings back such memories of her first year. I too was searching for information like a wild woman. It was so frustrating because everyone wanted to give me opinions on how I should treat her and how I should feel and all I wanted were facts. I just wanted to get all the medical facts. She was born in 1993 so the internet was much more limited then--we only had DOS--but we were searching for articles on Compuserve and then had to go to the medschool to get copies. Times have really changed!
Keep up the good work!
Cathe