My name is Kira; and my son Ben has been diagnosed with Infantile Blounts Disease.
Blounts Disease is a rare growth disorder also known as 'Tibia Vera'. Only 200,000 people in the United States have been diagnosed. There are two types of Blounts, Infantile and Adolescent. Treatments can range from bracing all the way up to surgery.
I really wanted to start this blog because there is not a lot of information out there. When my son was diagnosed a few months ago, one of the first things I did was look up 'Blounts Disease' on the internet. Unfortunately there was barely any information; and what information I did come across, was scary as Hell!
Because Blounts is so rare; there are no support groups; no forums (that I can find), there is no one that I can email; or get in contact with that has their own experience to share. I am going to start documenting Ben's journey; in hopes that someone out there will do as I did; and research Blounts on the internet. Maybe we can find eachother and finally have someone to talk to about this very confusing, very complex disease.