Dr. Francomano from the NIH called me this morning

[Guest guest]

I just wanted to let you know that Dr. Francomano, of the NIH in land,

returned my call of yesterday very early this morning. She said that she would

like for both me and (oldest son) to come to Baltimore in early-mid

January to participate in this study of genetic connective tissue disorders.

I thought the study was only for adults, but I suppose because he is 17, he is

considered one for purposes of this study. I told Dr. Francomano about both

and I having some autonomic nervous system dysfunction manifestion

(neurocardiogenic syncope, narcolepsy, IBS), and how that seems linked to EDS.

She agreed, and said, " We hope to find out how and why. " I also told her that I

am more Hypermobile than , but I think it is because of age. The more you

stretch a rubber band, the " looser " it gets from use. She laughed and agreed.

She did NOT say whether or not the study will pay for

transportation/accomodations for those who cannot afford to do so. I encourage

all those who are truly interested to call her. She was a very friendly woman,

and seems VERY interested in EDS and it's " relatives " .

~LoneStarRose~