> http://www.townsendtimes.com/Stories/0,1413,112~6010~2962954,00.html
>
> Townsend woman living in constant pain won't give up
> TOWNSEND -- To look at her, you would never imagine Townsend resident
> Anne Le'Cuyer, 55, lives in constant pain -- she suffers from lupus and
> Ehlers-Danlos Syndrome (EDS).
>
> Even so her life is full, keeping busy learning about and fund-raising
> for lupus research. She is currently organizing a charity poker run for
> such research.
>
> Le'Cuyer was diagnosed with lupus in 1999. In March 2005, she was also
> diagnosed with EDS.
>
> Since EDS is a little-known disease, Le'Cuyer is in the process of
> starting up a support group for others who want to know more or already
> suffer from it.
>
> "Ehlers Danlos is a disorder of the connective tissue caused by a lack
> of collagen," she said. Collagen is a protein that acts as a sort of
> glue, adding strength and elasticity to tissues.
>
> Le'Cuyer demonstrated her illness by popping out her shoulders, bending
> her thumb all the way back to her wrist and making her wrist pop out of
> place. She also showed how her skin, when it is pulled, comes way off
> her skeleton and goes back very slowly.
>
> She has already undergone one hip and one knee replacement, and the
> other side of her body will need to be replaced in the very near future,
>
> "I always just thought it was funny that I could do these crazy things,
> but it turned out to be something very serious," she said.
>
> "I have a rupture in my lower arm from dropping a pepper shaker on the
> end of my fingers," she said. "I also have a rupture in my index finger
> from using that finger to pull on a shoe on my foot from the back, like
> I've done for years."
>
> In 1999, when she was diagnosed with lupus, the doctors attributed her
> pain to that disease.
>
> "As it has turned out, the lupus is the underlying illness," she said.
> Le'Cuyer said she uses a handicapped placard on her vehicle, as some
> days she has an exorbitant amount of pain, and walking is difficult.
>
> "To look at me, you wouldn't think there is anything wrong," she said.
> "But the constant pain makes everyday things hard to do.
>
> "I get looks from people when I pull into a handicapped spot," she
> added. "I even had one man walk all the way around my car to see if
> there was a placard, then he gave me a dirty look."
>
> Little is currently known about EDS, and Le'Cuyer was even more at a
> disadvantage when it came to that particular diagnosis. It is a
> hereditary illness; she had no idea until two years ago who her mother
> was.
>
> "Being adopted, I had no clue about any family medical problems," she
> said. Le'Cuyer did some research and was reunited with her mother. She
> discovered her mother had the same symptoms as she did.
>
> Le'Cuyer's mission is to get as much information on EDS as possible.
>
> "The doctors in this area know nothing about it," she said. "I was
> diagnosed by Dr. Peter Tisher from Brigham and Women's Hospital in
> Boston. He knows some about it, but it is such a new thing, literature
> is scarce.
>
> "I have been sanctioned by the Ehlers Danlos Foundation to get a
> support group going," she said. "There are none in this area at all.
> Then we can get a charter and start some fund-raising for this as well."
>
> The support group will help people suffering with EDS to talk to each
> other and learn more about the illness.
>
> "Currently there is no cure or medication for it," she said.
>
> The first meeting of the support group is slated for Wednesday, July
> 13, at the Masonic Temple, Klondike Street, Fitchburg.
>
> For information, e-mail Le'Cuyer at rosie@... .
>
> The lupus fund-raiser will be held Sunday, July 17, leaving from the
> Eastwood Club in Fitchburg. All proceeds from the run will go to the
> Lupus Foundation. The cost is $15, and a homemade pasta dinner will
> follow.
>
> This is the third year Le'Cuyer has hosted the run. "I made a five year
> commitment, and I will do it," she said.
>
> "I just keep busy, there are days when I would like to just roll over
> and not get up, but if I do that, then the illness wins, and I won't
> have it," she smiled.