Hi Hannah,
My name is Sandi. I'm 52 years old and was just diagnosed 2 years ago, but
I have been suffering for along time not knowing what was wrong with me.

Please feel free to contact me direct if you want to just talk. I'm a good
listener.
shunter@....



-----Original Message-----
From: Hannah [mailto:sausages123@...]
Sent: Wednesday, October 27, 2004 11:18 AM
To: ehlersdanlossupportclub@yahoogroups.com
Subject: [Ehlers Danlos Support Club] Hello



Hi there,
My name is Hannah, i am a 19year old student living in Wales
in the uk. I was diagnosed with EDS when i was about 15. I was
diagnosed by a osteopathy consultant, who knew nothing about it, and
just said "dont worry we've figured out what you have - its Ehler
Danlos syndrome" Ive done all my own research and come to the
conclusion that i have EDS, but the type i'm not 100% sure of, i seem
to have symptoms from all over. Until i was about 16 i was very
interested in EDS, and did alot of investigation, seeing MANY MANY
MANY doctors and consultants, i also contacted the Mayo Clinic in the
US. However when i went to college, my EDS was embarassing, causing
alot of problems - so i basically tried to forget about it, i didnt
take any of my tablets, i wore heavy make up and sun glasses and
stopped visiting my online support groups. However a year ago i was
invloved in a car crash and my EDS has been aggrivating me ever
since, today i went to see a physiotherapist for my accident
compensation claim, and he explained that i ne4ed to do things for my
EDS before anything will improve. As i said i am not sure what type i
have, and even though it is thought that my mum has it, she does not
suffer like i do, i feel like i have no one to talk to that
understands what i'm going through, and although everyone is very
supportive, and i have the same friends and boyfriend that i had when
i was diagnosed - i feel that i cant explain things to them the way i
should be able to.

So that is me, i hope that someone reads this, and reply's with some
hope.

Thanks again

Hannah
**********





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