Finding a good doctor is difficult when you have a genetic connective tissue disorder. No specialty of doctor is taught how to treat connective tissue disorders in medical school. So the few doctors who understand my disease are either busy diagnosing children with it or doing research. There is one clinic near me that helps… Continue reading Finding a Good Doctor When You Have a Connective Tissue Disorder
I’d like to share with you some chronic illness-related things that I’ve found helpful over the last few months.
Most people have never heard of connective tissue disorders (after all, they are rare diseases!), so today I’m explaining what they are, how they affect people, and how to tell if you have one. And since I have one, hopefully this will help put my other chronic illness posts into context. And if you have… Continue reading Genetic Connective Tissue Disorders 101, Part 1
Here is my review of a book about living with a connective tissue disorder called A Guide to Living With Hypermobility: Bending Without Breaking, by Isobel knight. This book is covers connective tissue disorders from the perspective of patients – how they feel about it, and how it affects their lives. At the beginning of… Continue reading Book Review: A Guide to Living With Hypermobility Syndrome by Isobel Knight
Last weekend the Marfan Foundation‘s Marfan Conference was held at Mayo Clinic, and I’m really happy to say that I managed to get to it! I just wanted to share a bit of my experience, for anyone who is interested in going next year. The Marfan Conference is mainly about the connective tissue disorder (CTD)*… Continue reading Marfan Conference 2016
Today I explain how braces have helped me cope with hypermobile joints and my experiences with braces in general. In future videos, I will talk about specific braces which have helped me.