• Thu. May 19th, 2022

Dysautonomia Support Group Outreach

A Manitoba Dysautonomia group seeks to expand the support network for people living with a chronic disease.

Dysautonomia is a challenge because there can be a wide variety of health issues created by the disease, said Brandon-based Carol-Lynn Nother. She added that people living with the disease may have overlapping symptoms and health management, but patient experiences vary widely.


Brianne Curtis, Dysautonomia Manitoba support group member.

“It’s hard because we look so normal, but I’m medicated to the gills to be here sitting with you,” Nother said. “I’m already starting to get dizzy. I’m already starting to get ringing in my ears, and it’s medicated with strong drugs.”

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

Brianne Curtis, a member of the Dysautonomia Manitoba support group, added that this wide range of issues makes treatment difficult, as patients are often accused of “you don’t look sick”.

The Manitoba Chapter of Dysautonomia Support Group was launched in October 2020 to help people with the disease navigate the healthcare system.

It grew to have about 45 members.

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

“We’re just going to see more and more people with it,” Curtis said. “We need more help for people who already have it, and we know there will be many more people who will need help with post-COVID symptoms.”

The goal of the Manitoba Dysautonomia Support Group is to help raise awareness and support in the province and Canada at large, Curtis said.

Dysautonomia affects all parts of a person’s body, requiring them to see specialists for each individual symptom. Specialists will work with a specific area, requiring patients to consult a plethora of medical professionals to manage their condition.

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

She noted in her experience that Manitoba doesn’t have anyone who specializes specifically in autonomic disorders, making it a daunting experience to seek medical help.

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

Brandon-based band member Rylee Galiz.


Brandon-based band member Rylee Galiz.

As a local Dysautonomia Support Group, members can recommend healthcare professionals to work with to help get the process started.

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

One of the most critical aspects of helping people be diagnosed with dysautonomia is achieving orthostatic vital signs, said Rylee Galiz, a member of the Brandon-based group.

Orthostatic vital signs are one of the most important tests for people with the disease, but in many cases doctors are unsure how to perform 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 blood pressure – you check it at one minute, three minutes, five minutes and 10 minutes,” Galiz said. “It will give you a decent picture of whether someone has it or not.”

It is essential that more doctors start doing these tests, as it can help ease the burden on specialists and make a diagnosis more quickly. Galiz added that the test is also free, so it does not create additional financial pressure on the medical system.

“It’s 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 of these parts together for us.”

Galiz said even at the start of the group, it was clear that working with the healthcare system as someone with dysautonomia was a demanding journey. She had her first echocardiogram at age 12, but was diagnosed with the disease years later.

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

She said she traveled to Calgary after being diagnosed with the disease in 2008 to see a doctor she found through Dysautonomia International.

The diagnostic process was smooth, she said, and her condition was identified quickly compared to most people with dysautonomia.

She was able to manage the disease for a while, but once it got worse, she didn’t know what to do because, in her experience, there were no doctors in the province who specialized. in dysautonomia.

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

“We hope that will change as we continue to try to get our message across,” Galiz said. “It’s very frustrating for some. Some [people] will spend years and years trying to get a diagnosis.”

Although she can manage the illness, Galiz is now on disability. She doubts she will ever be able to work again because at 46 she assumes she suffers from progressive dysautonomia.

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

In many cases, finding the fix requires trial and error to figure out the best way to deal with the symptoms. Galiz takes 20 pills a day to manage her symptoms.

Norther has had symptoms of autonomic dysfunction since he was two years old.

She started 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 push-ups, but none of my teachers went to check that I didn’t have a heart rate of 124. They just marked me as fake,” Nother said. “They always assumed I was out of shape, but I was always so skinny – that’s because my heart rate was so high, it was burning calories and he had nothing left to give me.”

Nother underwent tests with six cardiologists, met with other specialists and medical professionals performing basic tests to find out that she was living with dysautonomia.

In many cases, one would assume that her abnormal heartbeat was the result of anxiety – a common experience shared by other members of the Manitoba support group.

Nother said she is now in contact with a large group of healthcare workers to help her 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 figure out what’s causing specific problems.

“I’m collapsing because the doctors here don’t know how to treat me and other symptoms are going badly,” 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 biggest and most consistent conversations is emphasizing that they should never compare or measure up against each other because it’s such a broad condition and that everyone experiences it differently.

“We’re together, but we’re all going to have a slightly different experience — we’re all in 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 about local Dysautonomia support groups, visit dysautonomiainternational.org.

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