Dysautonomia support group raising awareness

·7 min read

A Manitoba Dysautonomia group is looking to expand the support network for those living with chronic illness.

Dysautonomia is challenging because there can be a huge variety of health issues created by the illness, said Brandon-based Carol-Lynn Nother. She added those living with the illness can have some overlapping symptoms and management of their health, but the experiences of patients widely vary.

“It’s hard because we look so normal, but I’m medicated up to my gills to be here sitting with you,” Nother said. “I’m already starting to get dizzy. I’m already starting to get the whooshing in my ears, and that is medicated with heavy-duty medication.”

According to Dysautonomia International, the illness creates several different medical conditions causing malfunctions of the autonomic nervous system affecting heart rate, blood pressure, digestion, dilation and constriction of the pupils, kidney function and temperature control.

Dysautonomia Manitoba support group member Brianne Curtis added this wide array of issues makes receiving treatment difficult because patients are often met with the accusation “you don’t look sick.”

The Manitoba Chapter of Dysautonomia Support Group launched in October 2020 to help those living with the illness navigate the health system.

It has grown to include around 45 members.

Curtis said the number of people diagnosed with Dysautonomia will only grow given reports of long COVID. The pressures created by COVID-19 long haulers will only increase the wait times already in place for those looking for help with the management of their illness.

“We’re just going to see more and more people with it,” Curtis said. “We need more assistance for people who already have it, and we know there’s going to be a lot more people that are going to need help post-COVID symptom wise.”

The goal of the Manitoba Dysautonomia support group is to help grow awareness and assistance in the province and Canada in general, Curtis said.

Dysautonomia affects every part of a person’s body, requiring them to go see specialists for each individual symptom. Specialists will work with one specific area, forcing patients to visit a plethora of medical care professionals to manage their illness.

“We don’t actually have one doctor who can put all of those pieces together,” Curtis said. “We’re Band-Aiding up all these different parts because we’re trying to just fix the symptoms of all these different areas that are going wrong rather than having a coherent piece that we can put it all together.”

She noted in her experience, Manitoba does not have anyone who specializes specifically in autonomic conditions, making it a disheartening experience seeking medical aid.

This lack of medical support makes it hard to know where to go for treatment and which doctors to approach.

As a local Dysautonomia support group, members can recommend health-care professionals to work with to help get the ball rolling.

“It would have been really nice to have a group that was local that maybe could have helped me through that process — I wanted to be able to help other people going through the same thing,” Curtis said.

One of the most critical aspects to helping people receive a Dysautonomia diagnosis is conducting orthostatic vitals, said Brandon-based group member Rylee Galiz.

Orthostatic vitals are one of the most important tests for those living with the illness, but in many cases, doctors are unfamiliar with how to conduct the medical procedure.

“It’s quite simple — you lay a person down for five minutes and you get a baseline, so you check your heart rate and your blood pressure — you check it at a minute, three minutes, five minutes and 10 minutes,” Galiz said. “That will give you a decent picture of if someone has it or not.”

It is critical for more physicians to start doing these tests because it can help take the burden off of specialists and establish a diagnosis quicker. Galiz added the test is also free to conduct so it does not create an additional financial strain on the medical system.

“It feels like your whole body is falling apart and you don’t know where to start,” Curtis said. “We really need someone who can specialize and put all those pieces together for us.”

Galiz said even as they were first starting the group, it was clear working with the health-care system as a person with Dysautonomia was a demanding journey. She had her first echocardiogram at age 12, but was diagnosed with the illness years later.

“I’m lucky I found help before COVID,” Galiz said.

She explained she went out to Calgary after being diagnosed with the illness in 2008 to visit a doctor she found through Dysautonomia International.

The diagnostic process went smoothly, she said, and her illness was identified quickly in comparison to most people living with Dysautonomia.

She was able to manage the illness for a while, but once it got bad, she did not know what to do because in her experience there were no doctors in the province who specialized in Dysautonomia.

She added there is a doctor in St. Boniface that some patients see. But given the different ways the illness manifests, it can be tricky for patients to receive the support they need.

“We’re hoping this will change as we keep trying to get our message across,” Galiz said. “It’s very frustrating for some. Some [people] will go years and years just trying to get a diagnosis.”

While she can manage the illness, Galiz is now on disability. She doubts she will ever be able to work again because at age 46, she assumes she has progressive Dysautonomia.

“There’s no cure,” Galiz said, but managing symptoms can make a significant improvement to a person’s life.

In many cases, finding the fix takes trial and error to discover the best way to treat symptoms. Galiz takes 20 pills a day to manage her symptoms.

Nother has been exhibiting Dysautonomia symptoms since she was two years old.

She began looking for a diagnosis to explain what was happening to her body when she was 15.

“I always failed those tests at school where you had to measure your heart rate after doing a certain number of pushups, but none of my teachers went to check to make sure I wasn’t having a heart rate of 124. They just marked me as wrong,” Nother said. “They always assumed I was out of shape, but I was always so skinny — it’s because my heart rate was so high, it was burning through calories and it had nothing left to give me.”

Nother underwent tests with six cardiologists, met with other specialists and medical professionals running basic tests to discover she was living with Dysautonomia.

In many cases, there would be an assumption her abnormal heart rate was the result of anxiety — a common experience shared by others in the Manitoba support group.

Nother said she has connected with a great group of health-care workers now to help manage her Dysautonomia, but they remain unable to address the big picture of what is wrong with her body. They can put “Band-Aids” on specific symptoms, but she needs to see specialists to understand what is causing specific issues.

“I’m falling apart because the doctors here don’t know how to treat me and more symptoms are going wrong,” Nother said.

She now has a disability placard because she is unable to leave the house without a cane, walker or wheelchair.

Curtis noted in the support group, one of the most important and consistent conversations is highlighting how they should never compare or measure against each other because it is such a vast condition and everyone experiences it differently.

“We’re in it together, but we’re all going to have a slightly different experience — we’re all on the same boat, but our water is going to feel a little different,” Nother said.

As a chronic condition, it will take work to manage, she said, but patients can have improvements.

For more information on local Dysautonomia support groups, visit dysautonomiainternational.org.

» ckemp@brandonsun.com

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Chelsea Kemp, Local Journalism Initiative Reporter, Brandon Sun

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