Imagine being so winded after climbing a flight of stairs that you feel like you just ran five kilometres.
That’s how Amanda Bourgeois describes feeling after completing normal daily tasks that others take for granted.
“People think I’m just lazy or out of shape,” says Bourgeois.
It’s not laziness though. Bourgeois, 32, has a condition known as mitral valve prolapse with valvular regurgitation.
“As a child, I always had way too much energy,” says Bourgeois. “I loved running, playing sports, and doing kid things. Even then I found a lot of the time I could not keep up with my peers in physical activity.”
The Mayo Clinic describes mitral valve prolapse as when “the leaflets of the mitral valve bulge (prolapse) into the left atrium like a parachute during the heart's contraction.” This can also cause blood to leak back into the atrium, known as valvular regurgitation.
“The doctors discovered I had a tear in my mitral valve shortly after my birth in 1985,” says Bourgeois. “I went for my first surgery six months later.”
Bourgeois says the surgery to replace her mitral valve with a pig valve was experimental at the time.
“I was only the second infant to go though open heart surgery to replace a valve with a pig valve under the age of one year old,” says Bourgeois.
The surgery helped, but it was a temporary solution.
“Even with the surgery, they were not able to completely fix the valve,” says Bourgeois. “Over time, I became worse.”
“In my late teens, around 2004, I started to struggle to do basic thing that I had enjoyed doing most of my youth,” says Bourgeois. “By 2010, I was back in the hospital.”
That’s when, at around 19 years old, Bourgeois was diagnosed with mitral valve prolapse and valvular regurgitation.
Bourgeois doesn’t want it to take so long for others to be diagnosed.
“Many people can have this condition and not know it until they have a heart attack or pass away,” says Bourgeois. “They’re easy to catch when children are younger, but as you grow older, you can still develop it. They may just present to you as other things.”
Bourgeois hopes others will look for the warning signs so that they can recognize it and be diagnosed if they have it.
“I'm more often sick,” says Bourgeois. “I can develop a cough from nowhere and run out of breath faster. Sometimes oxygen in my blood stream does not get to where needs to and can cause my muscles to cramp. On the worst day, I become light headed and get severe migraines due to lack of blood flow in the brain.”
Bourgeois says her condition has caused her to struggle to fit in socially and at work.
“Due to not being able to keep up with my peers, I have found it hard to make friends,” says Bourgeois. “Even as an adult now, I find I'm drawn more to enjoying my own company, preferring things like reading a book and gardening.”
“When it started to affect my work, my doctors place me in ODSP as I could not do too much physical labour,” says Bourgeois. “At the time, I would get sick for months at a time, so having a consistent job was really hard. Employers wanted consistency.”
Despite her struggles, Bourgeois says she doesn’t want to complain.
“Most days are normal,” says Bourgeois. “I feel I'm being very negative in this which is not the case. I tend to be a happy cheerful person.”
For Bourgeois, finally telling her story is about spreading awareness and understanding for people with invisible illnesses.
“I believe that because of the struggles I go through with an invisible disability, I tend to be more mindful of others who may have invisible disabilities and try and help them when I can.”
