Well it's a long story.......I'll try and make it short.....( so please excuse
the typos)
.
My knees started dislocating when I was 5 years old and they would go completely
out of joint and I would have to hit them and pop them back in. This went on
and I would go to the Dr. and they kept saying "she will grow out of this" Well
I was a senior in high school (way back when) when I had my first knee
operation. And then another the next year and that seemed to fix the knees.
I'm a very active person, I showed horses, racquet ball, swimming, tennis, etc.
etc. until my elbow started hurting and they said it was tennis elbow so did
surgery for that. Then my shoulder degenerated into my clavicle bone (for no
reasons) and then surgery for that. Still no mention of EDS. Then I had to
have a '"Tummy Tuck" because I lost all my stomach muscles (I was only 40 years
old and had 1 child and wasn't over weight) But when they operated they said I
looked like an 80 year old women that was overweigh and had had 10 kids. (thank
you very much). Still no motion. I was wondering at this point what is wrong
with me. Then off we went to have to have a brow lift and eyelid surgery
because I lost 75% of my vision because my muscles gave out in my forehead.
Still no mention as to what is going one. Well about then I had had ENOUGH and
went to my family Dr. and said I wasn't leaving until he opened up his medical
book and tried to figure way a otherwise perfectly healthy women was having so
much problems with soft tissue/joints. He came up with EDS and sent me off to
Baptist Hospital in Winston Salem to a genetic consular and she confirmed that I
had EDS. After further review they then reviewed my 65 year old fathers autopsy
report and found that he had died of a dissecting aorta and they were sure that
he had the Vascular and joint EDS. Since I have been diagnosed I have had two
more knee surgeries and a tendon transfer in my ankle and I'm in paint all the
time. But I have lived with it this long what's a little longer.

The only thing I regret...is getting FORMALLY diagnosed because now long term
health care is PRICED OUT OF SIGHT FOR ME. And some won't even consider me.

As far as treatment......once they figure out what type you have...by the way do
you know that? If you have what I have I can help you out.



-----Original Message-----
From: Terry Hackett (Webical.com) [mailto:thackett@...]
Sent: Tuesday, October 19, 2004 2:15 PM
To: ehlersdanlossupportclub@yahoogroups.com
Subject: Re: [Ehlers Danlos Support Club] Newbie says hello


How exactly did you get diagnosed? My ortho, at the time, just started wiggling
and poking more and more things and said, sort of off-hand, "Did you know you
have Ehlers-Danlos?". I've never had any more 'official' diagnosis, but from
what I've read, and the problems I'm having, it all makes sense.

Also, now that you've been diagnosed, is there anything different you can do
about the problems, or is treatment still more or less the same?

Thanks for replying,

Terry
----- Original Message -----
From: Sandi Hunter
To: ehlersdanlossupportclub@yahoogroups.com
Sent: Tuesday, October 19, 2004 12:27 PM
Subject: RE: [Ehlers Danlos Support Club] Newbie says hello


Hi Terry,
Sound like my situation. I am 52 in a couple of weeks and I was diagnosed at
50 after 14 different ortho surgeries. I kept telling the Drs that something
had to be wrong with me... I was just too healthy to be having all these things
go wrong with my joints.

I'm out here if you need to chat.
Sandi Hunter
shunter@...


-----Original Message-----
From: Terry [mailto:thackett@...]
Sent: Tuesday, October 19, 2004 11:13 AM
To: ehlersdanlossupportclub@yahoogroups.com
Subject: [Ehlers Danlos Support Club] Newbie says hello



Hi,

I'm a 46-y.o. male, just joined. I was diagnosed with EDS a few
years ago on a visit to an ortho, but never thought much of it. Now
an assortment of joint and soft-tissue injuries and ailments have
mounted up to the point where I have a lot of discomfort and I'm
seeking more info and any treatment options.

I need to catch up on some reading first, it looks like.

Cheers to all,

Terry





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