Personal Note from Susan:

I have been in the world of Heritable Connective Tissue Disorders since the early 1990's.  I have five children and have had 9 grandchildren, most of who have various presentations of these disorders; so this has become my life. Initially researching in a MDs library of books and a friend's PC where the world-wide-web was looking like a giant encyclopedia of information, I've immersed myself in research and advocated for them in a system that often fails them. Many other people have made their way to me for help in their management of these genetic conditions, whether with bodywork, nutritional guidance, deciphering testing, or navigating practitioners; I am keenly aware of their struggles as they live with chronic symptoms. It is imperative that those who even suspect such disorders have annual preventative cardiac screenings for themselves and all related family members.

 

Connective Tissue Disorders

Genetic Connective Tissue Diseases

Marfan Syndrome marfan.org

Ehlers-Danlos Syndrome EDS ehlers-danlos.com