Wow, sounds tough! My story isn't nearly as bad, at least not yet. Never
though about the health care implications, yikes!

More later, maybe, at work now and gotta go.

Thanks again for the reply,

Terry
----- Original Message -----
From: Sandi Hunter
To: ehlersdanlossupportclub@yahoogroups.com
Sent: Tuesday, October 19, 2004 2:53 PM
Subject: RE: [Ehlers Danlos Support Club] Newbie says hello


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 th! is 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





Yahoo! Groups Sponsor

ADVERTISEMENT
<
http://us.ard.yahoo.com/SIG=12cq4up49/M=315388.5500238.6578046.3001176/D=grpheal\
th/S=1705094714:HM/EXP=1098285210/A=2372354/R=0/SIG=12id813k2/*https://www.orcha\
rdbank.com/hcs/hcsapplication?pf=PLApply
<http://us.ard.yahoo.com/SIG=12cq4up49/M=315388.5500238.6578046.3001176/D=grphea\
lth/S=1705094714:HM/EXP=1098285210/A=2372354/R=0/SIG=12id813k2/*https://www.orch\
ardbank.com/hcs/hcsapplication?pf=PLApply&media=EMYHNL40F21004SS>
&media=EMYHNL40F21004SS> click here
<
http://us.adserver.yahoo.com/l?M=315388.5500238.6578046.3001176/D=grphealth/S=:H\
M/A=2372354/rand=233561352>


_____

Yahoo! Groups Links


* To visit your group on the web, go to:
http://groups.yahoo.com/group/ehlersdanlossupportclub/


* To unsubscribe from this group, send an email to:
ehlersdanlossupportclub-unsubscribe@yahoogroups.com
<mailto:ehlersdanlossupportclub-unsubscribe@yahoogroups.com?subject=Unsubscribe>


* Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service <
http://docs.yahoo.com/info/terms/> .




[Non-text portions of this message have been removed]


Yahoo! Groups Sponsor
ADVERTISEMENT





------------------------------------------------------------------------------
Yahoo! Groups Links

a.. To visit your group on the web, go to:
http://groups.yahoo.com/group/ehlersdanlossupportclub/

b.. To unsubscribe from this group, send an email to:
ehlersdanlossupportclub-unsubscribe@yahoogroups.com

c.. Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



[Non-text portions of this message have been removed]



Yahoo! Groups Sponsor

ADVERTISEMENT

<http://us.ard.yahoo.com/SIG=12c52gqgu/M=315388.5500238.6578046.3001176/D=grphea\
lth/S=1705094714:HM/EXP=1098296132/A=2372354/R=0/SIG=12id813k2/*https://www.orch\
ardbank.com/hcs/hcsapplication?pf=PLApply&media=EMYHNL40F21004SS> click here

<http://us.adserver.yahoo.com/l?M=315388.5500238.6578046.3001176/D=grphealth/S=:\
HM/A=2372354/rand=248474561>


_____

Yahoo! Groups Links


* To visit your group on the web, go to:
http://groups.yahoo.com/group/ehlersdanlossupportclub/


* To unsubscribe from this group, send an email to:
ehlersdanlossupportclub-unsubscribe@yahoogroups.com
<mailto:ehlersdanlossupportclub-unsubscribe@yahoogroups.com?subject=Unsubscribe>


* Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service
<http://docs.yahoo.com/info/terms/> .




[Non-text portions of this message have been removed]


Yahoo! Groups Sponsor
ADVERTISEMENT





------------------------------------------------------------------------------
Yahoo! Groups Links

a.. To visit your group on the web, go to:
http://groups.yahoo.com/group/ehlersdanlossupportclub/

b.. To unsubscribe from this group, send an email to:
ehlersdanlossupportclub-unsubscribe@yahoogroups.com

c.. Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



[Non-text portions of this message have been removed]