October is Dysautonomia Awareness Month and Lexie Bale, a 27-year-old woman who lives in Edmonton, is sharing her experience with an autonomic nervous system disorder called postural orthostatic tachycardia syndrome or POTS.
Dysautonomia impacts every part of the body because it affects involuntary functions like regulating blood pressure and heart rate.
“It’s always up and down,” Bale says. “It’s just constantly changing. You don’t know what tomorrow’s going to look like.”
Bale says she was diagnosed when she was 10 years old after a year of testing and going to different doctors to find out why she was experiencing certain symptoms.
“It just started out of nowhere,” she says.
“I went from being totally healthy, (playing) outside as a kid, to I couldn’t get off the couch without passing out.”
The colour turquoise is used to help mark Dysautonomia Awareness Month. It is why those advocating for dysautonomia awareness like to say “make noise for turquoise.”
The colour was decided upon by the non-profit organization Dysautonomia International.
Many places, including Edmonton’s High Level Bridge on Oct. 31, change their lights to the colour turquoise to help raise awareness during Dysautonomia Awareness Month.
“Make noise for turquoise,” is the awareness catchphrase.
Lauren Stiles, president and founder of Dysautonomia International, says it took her two years to get diagnosed with POTS, which is “actually short.”
“The average diagnostic delay is nearly five years,” Stiles says.
Bale and Stiles say they experience many different symptoms, including fainting, pins and needles, tingling, weakness, blood pooling, brain fog, dizziness, difficulty standing and temperature dysregulation.
Some common treatments for POTS are increased salt intake, increased fluids, compression garments, beta-blockers, IV saline or albumin infusions.
Stiles says dysautonomia can be a heart condition, a nerve condition, a neurological condition, a circulatory condition and a gastrointestinal condition, and can also affect every part of the body due to it being a dysfunction of the autonomic nervous system.
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The autonomic nervous system controls the functions of the body that are done involuntarily like regulating blood pressure and heart rate.
POTS is not the only form of dysautonomia.
Other forms of dysautonomia include orthostatic hypotension, vasovagal syncope, inappropriate sinus tachycardia, autoimmune autonomic ganglionopathy, baroreflex failure, familial dysautonomia, pure autonomic failure and multiple system atrophy.
Stiles says she started Dysautonomia International when she discovered no other foundation was raising funds for research.
“I wanted to raise money for research because it was so frustrating that there seemed to be so many people who had this really debilitating illness that was hitting them in the prime of their lives, when they were young, and there was no foundation that was funding research on it.”
Stiles says the average onset age of POTS is 14 years old. She says that patients’ quality of life is often compared to those with COPD or kidney failure.
Dysautonomia is considered by many to be an invisible illness, Stiles says.
“If I put on lipstick and earrings and a suit, no one knows I have a chronic illness.”
“(But) it’s not an invisible illness because (you can see it) if you know what to look for,” Stiles says.
Because dysautonomia can be difficult to see, many of those with the condition face stigma around their illness.
“I drive with a handicapped placard, and when you look at me, I look like any healthy 27-year-old,” Bale says.
“I actually had someone get mad at me the other day parking in the handicapped stall, saying my placard must be fake (and that) there’s no way I could need that.”
Stiles says because of the stigma, many feel the need to explain their illness to others but “you don’t really have to explain yourself.”
“You don’t actually owe anyone an explanation,” Stiles says.
Bale says when she is faced with stigma, especially from strangers, she likes to educate them on her condition. She says she was inspired to share her experiences with POTS when her niece was diagnosed.
“If I don’t talk about it, no one’s going to know about it,” Bale says, adding that she wanted to help her niece feel not alone.
“I think it’s so important to have someone you can look up to or even just someone to say, ‘Hey, I actually do understand what you mean.’
“Know that there’s someone else in that same situation as you.”
Bale has advice for those struggling to get a diagnosis: keep advocating.
“There isn’t enough awareness around this, and often it feels like a battle to get your voice seen and heard when you’re dealing with this,” she says.
“Don’t be afraid to advocate for yourself, to stand up and say, ‘I know something is wrong with my body.’”
“The most important thing is to find a doctor who’s willing to listen to you and willing to work with you and learn with you,” Stiles says.
“We have data showing that more than a third of POTS patients are the ones who actually suggested the POTS diagnosis to their doctors because their doctors just weren’t thinking about it.”
Stiles adds that since the COVID-19 pandemic first hit, there has been an uptake in research for POTS and dysautonomia.
“We did the largest study to date on dysautonomia in long-COVID patients and we found that 67 per cent of long-COVID patients have a moderate to severe dysautonomia and an even larger percentage have a milder disorder,” Stiles said.
The stigma around dysautonomia and the misunderstanding of it is why advocates say Dysautonomia Awareness Month is so important.