Colleen Amann and Councilor John Cloutier present the Scarborough Town Council’s proclamation to make October Dysautonomia Awareness Month. Amann, whose daughter was diagnosed with Dysautonomia in 2016, said that she hopes that spreading knowledge and awareness will help researchers find a cure and patients to be helped faster. Photo courtesy of Colleen Amann
SCARBOROUGH — The Scarborough Town Council proclaimed October as Dysautonomia Awareness Month on Oct. 16. Dysautonomia is an invisible illness that affects more than 70 million people worldwide.
Emily Kovalesky, co-chair of Dysautonomia International Maine Support Group, said that Dysautonomia is an umbrella term for autonomic dysfunction that affects what the body does unconsciously.
These kinds of functions include regulating heart rate, blood pressure, digestion, dilation and constriction of the pupils in the eye and temperature control, said co-chair and Scarborough resident Colleen Amann, who spoke at the Oct. 16 council meeting and shared her daughter’s struggle with the disorder.
Councilor John Cloutier was inspired by the residents in Maine who have been working hard to spread awareness of the disorder, he said, and the Town Council voted unanimously in favor of the proclamation.
“I was honored to be approached about bringing this item to the Town Council, so that proclaiming this month of October as Dysautonomia Awareness Month, we can show our support to these patients, their families and the medical community in the search for their cure,” Cloutier said.
Before the official proclamation, Amann shared her story of her daughter, Molly, who is currently a sophomore in college and has a type of Dysautonomia called Postural Orthostatic Tachycardia Syndrome, or POTS, a condition where a person’s heart rate increases by more than 30 beats per minute by moving from a sitting or lying position to standing, said Amann.
“I’ve literally watched my daughter go from a resting heart rate of 65 to 170 in two minutes just from getting out of bed,” she said. “This often leads to dizziness, blacking out and passing out.”
Amann said that her daughter began having symptoms of Dysautonomia in the fall of 2013 but wasn’t diagnosed until March of 2016, nearly 2 1/2 years later.
“Our journey began in September 2013, when Molly came down with a mono-like virus,” Amann said. “She saw six different medical professionals and never returned to school that academic year because the head pain and fatigue she was experiencing were unbearable. She never had a formal diagnosis, just a lingering virus. She was sent to the Boston Children’s Hospital headache clinic in spring of 2014. She was never symptom free, and unfortunately, new symptoms came on in December. She was getting dizzy and passing out.”
Molly’s school days were shortened, and she was not improving, even with medication, hypnosis and other treatment, Amann said. Her family was beginning to get frustrated that there seemed to be no help available.
In January of 2016, Molly was experiencing such excruciating pain that she was taken to the emergency room and eventually admitted to the hospital, Amann said.
“This resulted in a referral to a new neurologist who suspected autoimmune Dysautonomia,” she said. “He started her on IV treatment in March of 2016 and sent us to Beth Israel and Mass General for additional testing and treatments. Molly has been receiving IV treatments, locally, at Barbara Bush Children’s Hospital every three to five weeks for two to three days ever since.”
One reason that Amann said she thinks Dysautonomia isn’t often diagnosed immediately is because of the nature of the illness; it’s impossible to measure pain on a scale, and this can lead to doctors first examining mental health if there are no physical ailments.
As Dysautonomia becomes covered in medical schools, Amann said that she thinks more doctors and nurses will be able to spot the signs sooner.
Amann said that the Dysautonomia International Maine Support Group began earlier this year. There is also Dysautonomia International, a nonprofit group that seeks to provide support to patients who are suffering with this disorder as well as to spread education and awareness to the greater community.
Molly and her mother have been getting involved in awareness events for Dysautonomia for years, with Molly, now a “frequent flyer” at the Barbara Bush Hospital in Portland, volunteering her time and being an advocate for other medical conditions.
The Town Council had a brief discussion before the proclamation, during which Councilor Jean-Marie Caterina said that she had never heard of Dysautonomia until the item was brought to the council.
Dysautonomia International Month has also been proclaimed in Portland and Westbrook, said Kovalesky.
The meeting in Scarborough had the most attendees, Amann added, and she and Kovalesky are working on a proclamation from the governor of Maine for 2020.
The proclamation for Scarborough only declares October of 2019 as Dysautonomia Awareness Month, but the council agreed that they would bring the item back annually, so that it will continue to be discussed and brought to the forefront of everyone’s mind each year.
“My hope is that by raising awareness, the journey of patients might not be as long and difficult as ours has been,” Amann said. “My hope is that we’ll receive more funding to do more research so that we’ll one day find a cure.”
Catherine Bart can be reached at cbart@mainelymediallc.com or 780-9029.
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