The 2018 Mrs. Maine International Pageant will so much more than a celebration of poise and beauty. It will also make history when Devan Demmons will proudly walk on stage with her service dog, Duke. This will be the first time a service animal will be included in any pageant, and Devan, a 27-year-old dysautonomia warrior whose life has completely changed thanks to Duke, is so proud to have him accompany her on her mission to raise awareness about autonomic disorders.
Devan says she has never been a pageant kind of woman. But her determination to advocate for those who battle autonomic disorders is so strong, she is pushing past her comfort zone to bring this issue to a large audience.
Though her onset of symptoms occurred in early adolescence, she was only diagnosed with postural orthostatic tachycardia syndrome (POTS) seven years ago. She underwent years of tests, treatments and misdiagnoses – not uncommon for dysautonomia patients, as the current average time to diagnosis is five years.
“During my first year of high school, I was completely healthy, active, and social,” Devan said. “That all changed my sophomore year, when I started passing out (syncope) and having digestive issues. As a result, I underwent four heart ablations and was diagnosed with Crohn’s disease, which was a misdiagnosis. I was put on 32 pills a day with an infusion of Remicaide every five weeks.”
Though she was being treated for the wrong illnesses, her symptoms got better, until her junior year of college when her syncope returned. She underwent another unsuccessful ablation before her POTS symptoms became a daily struggle.
“I utilized all the hospitals in Maine, Boston and finally ended up in Michigan six years later, only because a family member is a doctor out there and pulled a team together,” Devan explained. “Within 3 days of being there, I was diagnosed with POTS after failing the tilt table test. I was very lucky that the following week I was able to get right in to see Dr. Blair Grubb, who said that, yes, I had POTS. He also said that I had additional issues, but wasn’t sure what they were, and that I was one of the worst cases he had ever seen.”
During her journey to diagnosis, Devan battled not only her inner demons that wanted to ignore the illness in the hopes that it would go away, but disbelief from others that she was sick.
“For a while in high school, I was told by friends, family, and doctors that I was faking my symptoms for attention,” she said. “I started to isolate myself from the world around me and now only have a very small group of close friends and only see some family.”
With a diagnosis and renewed determination to live her life to the fullest, Devan is fighting every day to make a difference in her world. Her devoted husband has been a constant source of strength for her. And then, she met Duke.
“My life changed completely when a miracle happened, and I got a service dog who alerted me before my syncope episodes,” she said. “I still can’t drive, wor, or attend school, but I can walk down the aisle at the grocery store and take a bath alone. These may not seem like big accomplishments, but to a 27-year-old who hasn’t been able to do these for years, it’s huge.”
Devan does not describe herself as a “girlie girl,” but when she met the Mrs. Maine International 2017 at a sportsman show in her state capital, she was inspired to become involved with the competition.
“Everyone wanted to talk to her at the show, and they didn’t even know her,” Devan said. “I thought that was the coolest thing, even though it was way out of my comfort zone for many reasons. I began to think that this pageant would be a great way to raise awareness for dysautonomia.”
She was not looking forward to re-learning and getting used to walking in stiletto heels or talking to lots of people, Devan is determined to educate people about dysautonomia, in the hopes that others will not have to travel the long road she had to get to a diagnosis.
“My hope with this pageant isn’t to win the crown, though that would be nice,” she said. “It’s to raise awareness for dysautonomia, so no one will have to go through what I have to be taken seriously to get the correct diagnosis or to be thought of as crazy or making it up. I want doctors, nurses, EMS, parents – everyone – to be curious enough about this disease to do a little research. Maybe someone in their life can have a better experience, and maybe one day we could come up with a treatment and possibly a cure.”
In addition to her work with the Mrs. Maine International Pageant, Devan spends her time volunteering for a number of organizations, including Project Healing Waters, Pine Grove Program, Wreaths Across America, The Travis Mills Foundation and the American Red Cross.
“I have been lucky enough to find a husband that accepts me for who I am and doesn’t mind helping me on my bad days (which seem to outnumber the good),” she said. “I have a great family and limited friend support system always willing to do what I need or want. If I can’t attend school or work, I want to be a voice for others like me, and I’m so excited for this opportunity.”