She sees her life changing

A mother from Deux-Montagnes who worked on construction sites has been almost bedridden since she was diagnosed with a rare autoimmune disease that affects her muscle strength.

“Not even a year ago I was picking up the jackhammer and working full time […] But I became a prisoner of my body,” confides Marie-Pier St-Louis discouraged.


GEN-MARIE-PIER ST-LOUIS

The 33-year-old mother of three children aged 6 to 13 was diagnosed with myasthenia gravis last year. It is a rare autoimmune disorder characterized by rapid muscle weakness (see other text).

Ms. St-Louis had lived with a double vision problem for several years without giving it too much thought.

But it was ultimately an ophthalmologist who suggested a blood test, as it is one of the first symptoms of myasthenia gravis.

Then his condition deteriorated rapidly after the diagnosis.

She felt very tired. She also began taking several medications such as immunosuppressants to stabilize her condition, but to no avail.

closed neck

Still tired and gasping for breath, she was finally hospitalized last winter. Her throat closed.


GEN-MARIE-PIER ST-LOUIS

Marie-Pier St-Louis adds that she had to be intubated with a smaller pediatric tube because the opening had narrowed so much due to her muscles relaxing.

She had to be kept in an induced coma for four days, she continues.

Last week she had surgery to remove her thymus gland. In some patients, removal of this gland, which is linked to the immune system but is useless in adulthood, helps limit the disease.

It’s too early to know if the operation was successful.

“I don’t even know if I’ll find a normal life again,” she breathes.

An elephant on the shoulders

Fatigue weighs heavily on his everyday life. For example, she has to sit down after five minutes at the Canadian Tire Store.

“It’s like having an elephant on my shoulders. My body can’t take my weight anymore,” she says, to illustrate how she’s feeling.

The person who also worked in commercial housekeeping and disaster recovery now has to stay at home.

“We manage as best we can, but I don’t know what to do,” she says of the financial difficulties that await her family.

Also, because myasthenia gravis is a rare condition, she feels isolated. She regrets that she received very little information about what to expect.

However, Ms. St-Louis has no intention of giving up in the face of this ordeal that life inflicts on her.

An often misunderstood disease

Myasthenia gravis is a misunderstood disease with its ups and downs and is often misunderstood by loved ones, according to Muscular Dystrophy Canada.

“There’s nothing to say, ‘This is how this disease is going to continue,’” said Marie-Hélène Bolduc, vice president of programs and services. Doctors can’t predict it, and so we always “hope” or “expect.” »

The organization provides support for people with myasthenia gravis, one of the 160 neuromuscular disorders under their direction.

Not scalable

Ms Bolduc emphasizes that it is not a progressive disease that can, for example, worsen over time, but cyclical.

“With days that are worse than others or sometimes even within one [même] day,” she said.

It is also an autoimmune disease, meaning it is caused by an abnormal response in the immune system.

A patient may also experience periods of quiescence or even remission for a few years.

For this reason, she emphasizes that she has often seen “the lack of understanding on the part of the spouse, the children or the relatives”, especially since the complaints, such as great tiredness, are invisible.

Muscular Dystrophy Canada advises that research is being conducted on the disease and medications are often evaluated to control symptoms. However, there is still no cure.

Do you have any information about this story that you would like to share with us?

Do you have a scoop that might be of interest to our readers?

Write to us or call us directly at 1-800-63SCOOP.

Leave a Comment