A mother from Deux-Montagnes, who worked on construction sites, is now almost bedridden since she was diagnosed with a rare autoimmune disease that attacks her muscular strength.
“Not even a year ago, I had the jackhammer in my hands and I was working full time […] But I became a prisoner of my body”, confesses Marie-Pier St-Louis despondently.
The 33-year-old mother of three boys ages 6 to 13 was diagnosed with myasthenia gravis last year. It is a rare autoimmune disease characterized by a rapid weakening of the muscles (see other text).
For several years, Mrs. St-Louis had been living with a double vision problem, without worrying too much about it.
But finally it was an optometrist who suggested a blood test, since it is one of the first symptoms of myasthenia gravis.
Then his condition deteriorated rapidly after diagnosis.
She felt very tired. She also began taking various medications, such as immunosuppressants, to try to stabilize her condition, without success.
Still tired and struggling to catch her breath, she was finally hospitalized last winter. Her throat closed on itself.
Marie-Pier St-Louis adds that she had to be intubated with a smaller children’s tube, so much so that the opening had narrowed from her muscles relaxing.
He had to remain in an artificial coma for four days, he continues.
Last week, he underwent surgery to remove his thymus. In some patients, the removal of this gland linked to the immune system, but useless in adulthood, helps to limit the disease.
It is still early to know if the operation was successful.
“I don’t even know if I’ll ever find a normal life again,” he breathes.
An elephant on the shoulders.
Tiredness weighs heavily on your daily life. For example, you must sit down after five minutes at the Canadian Tire store.
“It’s like having an elephant on my shoulders. My body can no longer support my weight,” she says to illustrate how she feels.
The one who also worked in commercial cleaning and disaster recovery must now stay home.
“We manage as best we can, but I don’t know what to do,” he confesses, about the financial difficulties that await his family.
Since myasthenia gravis is also a rare disease, she feels isolated. He has received very little information about what awaits him, he regrets.
However, Mrs. St-Louis does not intend to give up before this ordeal that life imposes on her.
A disease often misunderstood
A misunderstood disease with its ups and downs, myasthenia gravis is often misunderstood among loved ones, according to Muscular Dystrophy Canada.
“There’s nothing that says ‘this is how this disease is going to go,'” explains Marie-Hélène Bolduc, vice president of programs and services. Doctors can’t predict it, so we’re always “waiting” or “waiting.” »
The organization offers support to people with myasthenia gravis, one of the 160 neuromuscular diseases under its leadership.
Ms. Bolduc emphasizes that it is not a progressive disease, which can get worse over time, for example, but rather a cyclical one.
“With days that are worse than others or even, sometimes, within a [même] day,” he said.
It is also an autoimmune disease, therefore triggered by an abnormal reaction of the immune system.
A patient may also experience periods of calm or even remission for a few years.
For this reason, he highlights having seen many times “the misunderstanding of the spouse, children or loved ones”, especially because ailments such as great fatigue are invisible.
Muscular Dystrophy Canada notes that research into the disease is ongoing and medications are often being tested to control symptoms. However, there is still no cure.
#sees #life #change