2024-02-11 05:00:00
A Montrealer of Lebanese origin suffering from a rare disease with multiple symptoms considers herself lucky to have been treated in Quebec and wishes to give a voice to those affected.
“Being here saved my life, literally. Where I’m from, you can’t even get into a hospital without paying a fee. […] I don’t even know if I could have been operated on in Lebanon,” exclaims Krystel El Koussa. The 28-year-old woman suffers from myasthenia gravis, a very rare neuromuscular disease nicknamed “snowflake disease” because the symptoms differ from one person to another.
In August 2022, barely a year and a half after arriving in Quebec, Ms. El Koussa began to experience worrying symptoms: constant fatigue, difficulty swallowing, lack of balance, drooping eyelids.
“Once, I even fell in the middle of the street, in front of a bus. […] “as I did not have a family doctor, I was consulted in walk-in clinics and emergency rooms several times,” emphasizes the young woman who was then 26 years old.
Krystel El Koussa PHOTO Pierre-Paul Poulin / Le Journal de Montréal
In December 2022, she was referred to the Montreal Neurological Institute-Hospital where she was diagnosed with myasthenia gravis. This autoimmune disease disrupts the “communication between the nerves and the muscles” which weakens the muscles of the person who suffers from it.
If she confides in Journaltoday is to raise awareness about this disease and to give them a little hope.
“I want people to know that you can live an almost normal life, even with a chronic illness, even though I’m young,” she explains.
Rare
Only one in 100,000 Canadians have the disease and patients under 30 are extremely rare, explains Jeanne Teitelbaum, director of the neuro-intensive care program at the Montreal Neurological Institute-Hospital.
“I have been practicing since 1982 and I have seen very few young patients like her in my career. I can count them on one hand and she is the only one I treated who also had a tumor,” explains the doctor.
In addition to already being an exceptional case, Ms. El Koussa was part of the 10% of people with snowflake disease who develop a thymoma, a cancerous tumor located in the upper thorax.
“I was in shock, because I have always been a fit person […], but I counted myself lucky to be in Quebec to undergo all the procedures. Before the health exams, I asked if I would have to pay anything out of pocket, when I was told it was covered, I was able to relax and focus on my health,” adds- she said.
Three weeks after being hospitalized, the young woman was finally able to undergo surgery. Although everything went as planned, the rehabilitation was very painful and the young woman even used the services of a speech therapist to relearn how to eat since the muscles of the tongue were affected, as well as her swallowing.
Remission
A little over a year after her operation, the filmmaker was able to return to work, but she continues to be followed by the Montreal Neurological Institute-Hospital. She is still on medication and sees a physiotherapist to help her with her movements.
“I know that I will always live with this illness, there are good days and less good days, I try to remain positive,” the artist philosophizes.
Symptoms of myasthenia gravis
- Swallowing problem
- Speech disorder
- Imbalance
- Double vision or vision loss
- Fatigue
- Weakness in the body
Myasthenia gravis affects approximately one in 100,000 Canadians. Of this number, 10% of patients will develop a chest tumor called a “thymoma”.
This condition is nicknamed “snowflake disease” because its symptoms differ from person to person.
People with the disease usually develop several symptoms.
There is no treatment for snowflake disease; it is a chronic illness that requires regular medication.
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