Westbrook Mayor Mike Sanphy issues his proclamation with Sam Birch and Emily Kovalesky, left, and Colleen Amann and Brandon Amann. Chance Viles/ American Journal
WESTBROOK — Mayor Mike Sanphy has declared October “Dysautonomia Awareness Month” in the city to shed light on the little-known autonomic nervous system disorder.
For Westbrook resident Emily Kovalesky, who has the disorder, having a month to bring awareness to dysautonomia means a lot. The under-diagnosed disease can cause intestinal pain, lightheadedness, shortness of breath, brain fog and many other seemingly unrelated symptoms, making it hard to properly diagnose. The disorder is serious and can result in mild disability to death.
“People say it’s rare, but it really isn’t,” said Kovalesky, co-chair of Dysautonomia International’s Maine branch. “It is really common, but often undiagnosed.”
“It’s the most common diagnosis you’ve never heard of,” co-chair Colleen Amann added.
Kovalesky and Amann said it usually takes up to six years for the disease to be diagnosed, while patients, meanwhile, are misdiagnosed and prescribed other treatment that fails.
Because the disease is not well known and is often misunderstood, it is easy to feel alone, Kovalesky said, and that’s why groups like the non-profit Dysautonomia International matters.
“It’s a validation. That support can make a difference,” Kovalesky said. “Sometimes you feel alone or crazy for feeling terrible when the doctors can’t seem to find anything wrong. … But you learn others deal with it, too.”
Kovalesky and Amann helped create the Maine branch of the awareness group in the past year or so, as nearly every state but Maine had its own branch.
Dysautonomia International, both in Maine and around the country, provides support groups for patients with the disease, as well as offers training to doctors, who can’t always recognize dysautonomia.
“Increased awareness about dysautonomia will help patients get diagnosed and treated earlier, save lives, and foster support for individuals and families coping with dysautonomia in our community,” Sanphy said Oct. 4 at City Hall during a proclamation declaring October Dysautonomia Awareness Month.
“Awareness means so much to me. I think having it in the town I live in definitely means the most,” Kovalesky said.
Portland also declared October. Dysautonomia Awareness month Monday night and will be lighting up City Hall turquoise, the color used to signify the disease’s awareness.
For more information, visit www.facebook.com/groups/dysautonomiainternationalMEsupport, or email maine@dysautonomiainternational.org.
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