New Member

[Guest guest]

Thanks to all of you!

, I am also a Cameron (by marriage). Coincidentally my son's

Grandparents live near Hamilton, so if necessary McMaster is convenient. My

hematologist seemed at a loss as to where the EDS specialists are, I guess

diagnosing the type is the first big step. My son has been an " adult " for a

few months now, 18 years old, they seem to grow up in the blink of an eye.

Aase, thanks for the link to Dr Byers. I will take the criteria to my

doctor, it looks like I'll have to find a medical geneticist who specializes

in EDS before any testing is done.

It seems common that people do not easily fit into the EDS types. I can't

for the life of me slot myself into any of the boxes. What has led the

doctors to EDS are my pretzel fingers, syringomyelia and an extended

bleeding time, hence the collagen platelet studies. The hematologist says

this is a rare manifestation of a rare disorder.

I have been ill for so long, and when doctors couldn't help me they labelled

me with " eating disorder, somatoform illness, atypical depression, etc etc

etc " . I'm relieved to finally have some answers, and know this will lead to

better symptom management, and lessen the chance of more damage from

invasive endoscopic procedures. Over the years I have become quite afraid of

doctors, now I know the reason. LOL

Wishing you a pain free day!

Liz

_________________________________________________________________

Designer Mail isn't just fun to send, it's fun to receive. Use special

stationery, fonts and colors.

http://join.msn.com/?pgmarket=en-ca&page=byoa/prem&xAPID=1994&DI=1034&SU=http://\

hotmail.com/enca&HL=Market_MSNIS_Taglines

Start enjoying all the benefits of MSN® Premium right now and get the

first two months FREE*.