Tuesday August 6, 2002
EUGENE MCCARTHY
RECORD STAFF
Both Tracy Graves (right) and Cindy Foster suffer from a rare condition called Behcet's disease. They will be joining a charity walk in New York to raise money and awareness about the disease.
(DAVID BEBEE, RECORD STAFF)
CAMBRIDGE -- A remarkable coincidence involving a rare disease has united two Cambridge women.
Cindy Foster and Tracey Graves did not know one another, until Graves was diagnosed with Behcet's disease, an extremely rare disease which afflicts its sufferers constantly with unrelenting severe pain from the top of their heads to the tips of their toes.
An Internet search for others with the disorder turned up Foster, living only a few kilometres away.
Considering there are estimated to be only between 15,000 and 20,000 Behcet's sufferers in all of North America, that coincidence is something that still amazes the two women.
Behcet's disease attacks every part of their bodies with unrelenting ferocity.
It forces them to take more than a dozen pills a day, be regularly seen by five or six specialists and rely on potent painkillers to take some -- but never all -- of the bite out of the suffering.
Among the medications they take -- the dose depending on the severity of the pain at the time -- are corticosteroids, which cause major variations in weight, requiring them to keep "fat clothes" and "thin clothes," said Graves.
An autoimmune disorder of unknown origin, Behcet's (pronounced Buh-shettes) inflames blood vessels throughout the body. It is known as a vasculitic disease. While a genetic cause is believed possible, neither woman has any familial history.
In Japan, it is the leading cause of blindness.
It generates multiple symptoms that are usually experienced singly by persons with, among other things, fibromyalgia, rheumatoid arthritis, Crohn's disease, multiple sclerosis, amyotrophic lateral sclerosis, lupus, severe migraine, stomach and esophageal ulcers as well as inflammation of the eyes.
As well, sufferers are prone to mini-strokes and Foster has had several.
The disorder is named for Hulusi Behcet, a Turkish dermatologist who first noticed a combination of mouth ulcers (cankers), genital lesions and recurring eye inflammation in 1937. The disease has been also dubbed the Silk Road or Silk Route disease because it is most common in the area between Japan and China to the Mediterranean.
The development of cankers -- Graves has had around 100 in her mouth, tongue and throat at a time -- is not only extremely painful but "you don't feel much like eating at times like that that."
The women say the onset of numerous cankers is one of several symptoms doctors use to make a positive diagnosis of Behcet's disease.
On Saturday, the two women discussed how they cope and their plans to attend a walk in East Meadow, N.Y., on Sept. 14 to raise awareness and funds for the American Behcet's Foundation.
Graves, 35, the mother of two children, aged nine and 15, is definitely going to travel to the metropolitan New York area that weekend to at least try to walk a part of the five-kilometre route. That's no mean feat when "the 1,000 yards to the corner store can be like a 1,000 miles on bad days."
Foster, 36, the mother of a six-year-old, hopes to accompany her. Much however, will depend on how she is managing around that time.
The two women would like to learn if there are any more Behcet sufferers in this general area.
That's because, until they found each other last fall and began a close friendship, neither could adequately explain to someone how they felt at any given time.
"There are good days and really bad days and it really helps to have someone close by who understands what you are going through," said Graves.
"Especially when you're sick and tired of being told by doctors and others for so long that it was all in my head," added Foster.
They have met fellow sufferers in many parts of the world through the Internet, often using chat rooms in the wee hours of the morning when they are unable to sleep because of pain. They never get any more than a couple of hours of uninterrupted rest.
A former Cambridge real estate agent, Foster was diagnosed about five years ago. Graves -- on long-term disability from her job as a former credit and collections clerk with United Rentals -- was told she had Behcet's about a year ago by her Guelph dermatologist.
Desperate to find out all she could about her affliction, Graves researched it on the Internet and put out e-mail queries hoping to find someone with whom she could talk. That's how she connected with Foster, who lived not far from her in the Hespeler area of Cambridge.
Foster said she has asked her Toronto specialists for names of other Behcet's sufferers they treat, but they have refused to divulge them, citing privacy regulations.
Asked how they cope with such a devastating illness, Foster said, "constant pain becomes part of your ordinary activity . . . you learn to adapt, you don't dwell on it anymore and you keep going. I don't let the disease stop me from doing anything. The day I say I'm not going to do something because of the illness, then the disease has won," she said, as Graves nodded agreement.
Anyone diagnosed with Behcet's who wants to communicate with the women or contribute to the New York walk fund can contact Graves or Foster by e-mail at: [email protected]
The women said they prefer e-mail contact because many times they are so debilitated by the disease that they cannot carry on phone conversations.
Information about the disease can be found on the World Wide Web at http://www.behcets.com/
[email protected]
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