This is a place for families as well as patients who are looking for information, contact and support for people living and dealing with trichothiodystrophy. This group is founded by parents of children living with this disorder and would like to share and support other families living with the same. As well we would like provide any helpful information to those who provide care or interact with any persons facing this disorder. We are not doctors or specialists, we are concerned parents who want to provide the best we can for our children.
Hi my name is Kelly and my son Jake (he is almost 8) has very similar issues as Dottie. Right now our biggest battle is the bi-lateral hip subluxation, in
Another one involving enlarged liver/spleen as described with Kyle is Multiple Sulfatase Deficiency...don't know if this helps at all. Just info I've come
Hello everyone Just wondered how you are all doing ? Life s been pretty busy for us , I have a newletter for the Friends of Sammy-Joe Foundation you can have a