Seventeen-year-old Julianna Almeida has been struggling with a rare disorder that has left her isolated and nearly bed-ridden and now her mother is advocating for her daughter, trying spread awareness and hoping more doctors will be better educated and equipped to treat patients.
"We figure the more we get it out there you know, the more people will have the courage to come forward. More doctors will get in on this and kind of do more research," said April Almeida.
Postural Orthostatic Tachycardia Syndrome (POTS), official name, Dysautonomia, is a disorder of the autonomic nervous system where the autonomic nerves don't work properly. Essentially, the brain isn't sending the right messages to the body and therefore doesn't regulate it properly.
Symptoms such as chest pain, lightheadedness, fainting, fatigue, shortness of breath, migraines, among many others, are associated with the illness.
'Everybody just thinks well she looks great so how can she be this sick.' - April Almeida
These are all things that the high school student has been struggling for over the past few years.
The teen is now receiving home schooling due to the debilitating conditions. She had to drop out of regular school by Grade 11.
"She just couldn't get out of bed for school," said Almeida.
"Her friends around her and the teachers were scared to have her in class because they could see that she would go pale and she would black out or she would begin to faint."
Almeida says it's not a 'tangible' illness.
"She looks pretty normal most days," said Almeida. "Everybody just thinks, well, she looks great so how can she be this sick where she had to drop out of high school?"
'Make noise for turquoise'
As part Almeida's campaign, she has gone straight to the mayor's office, to get the attention of the city—and as a result, Hamilton city hall will light up turquoise tonight to coincide with Dysautonomia awareness month, an international event with the slogan, "make noise for turquoise."
It was a process to get properly diagnosed, but Almeida says her daughter didn't have to undergo any invasive testing. "It was just, here's some meds … there's really nothing we can do about it," said Almeida about what doctors told her.
Essentially Almeida's doctor told her that it is what it is, and to hope the disorder wears off in her mid-twenties.
A lack of knowledge in Canada
One of the biggest struggles is the isolation that goes along with the illness for the patients and families looking for both medical and emotional support.
"You just feel like you're on your own … and locally there's nothing," said Almeida. "Our doctor's been great referring us wherever we need to go, but it's kind of a research on your own and find which doctors or cardiologists in the Ontario area handle this."
'The idea is to create awareness and not to create panic.' - Dr. Juan Guzman
According to Hamilton General Hospital doctor and McMaster associate professor, Dr. Juan Guzman who specializes in the condition, there isn't a Canadian database so it's not clear exactly how many Canadians have POTS. Based on previous publications from the U.S. however, Guzman says prevalence is around 1 per cent in the general population.
Guzman also says that according to published data, POTS is more frequent in female patients with a 4-1 ratio with the age ranging from 15 to 45.
"The issue is that due to the variety of unspecific symptoms and different individual patterns it is difficult to diagnose. That is the challenge for doctors in the community," said Guzman.
Guzman says this might have an impact in the time it takes to diagnosis and manage.
"I want to emphasize that POTS patient to patient variability is extremely high and we have to be careful to not generalize individual patient experiences that can mislead the public, said Guzman. "The idea is to create awareness and not to create panic."
Like Guzman, Almeida's idea is to spread awareness so all doctors are aware of the condition, especially family doctors.
"It's scary and it's not to take away from families that have children, God forbid with cancer or diseases where maybe there's still no cure, but there's so much more support and there's fundraising and there's something where you can tangibly put yourself into and get involved.
"With this you're just kind of on the outskirts of everything and you're doing all the research on your own and most doctors have never heard of it, so they just think you're nuts," said Almeida.
Almeida will be hosting a fundraising event today from 4:30 p.m. to 7:30 p.m. at Upper Gage Garage, 451 Upper Gage Avenue. Money raised for this event will be donated to the University of Calgary's Autonomic Research Lab. Donations can also be made online.