Helen,

Are you anywhere near the Baltimore, MD area? The NIH is doing research on
all of these connective tissue disorders. The lead researcher on the
project was Dr. Clair Francomano. She has since left NIH and gone into
private practice so she can better help patients. The study is full and no
more participants are being accepted, but Dr. Francomano has the benefit of
all the knowledge she gained while working on the study and a close
relationship with the doctor at NIH who is finishing the study, Dr. Nazli
McDonnell. These are two of the best doctors I have ever met when it comes
to EDS and connective tissue disorders. If there is any way for you to get
to Baltimore to see Dr. Francomano, I highly recommend it. She can probably
help you get answers for your son better than anyone else I know of.

-Barb