Rare syndrome: a Saguenéenne “allergic to gravity”

Rare syndrome: a Saguenienne

UPGRADE DAY

A 23-year-old woman who dreamed of becoming a nurse now finds herself forced to spend most of her time in bed due to a rare syndrome akin to “gravity allergy.”

“It’s a wheel that keeps turning, I feel like I can never get out of it. It's as if I was a prisoner of my body, “says Journal Émilie Bergeron, her throat tied with emotion.  

For five years, the young woman from Saguenay fears at any time to faint as soon as she makes the slightest physical effort. Often, just standing for too long can make her giddy. 

Ms. Bergeron actually suffers from postural orthostatic tachycardia syndrome (STOP), a condition whose primary is a dangerously high increase in the heartbeat while standing. 

“I spend most of my time lying down, I wear compression pants and I have an array of medications to take to keep from fainting. It's not livable, ”laments the young woman of 23 years. 

An unknown phenomenon

Well Although the prevalence of this symptom is estimated at 0.1% to 1% of the population, especially women, it remains little known among the medical community. It will have taken more than two years before we put our finger on Ms. Bergeron's illness. 

“Doctors told me it was because of anxiety, others that I needed to eat more salt and still others thought it was due to medication I was taking,” she says.  

But after several more blackouts, convulsive episodes and hospital visits, the nurse-to-be suspected something was wrong.

It was ultimately a resident doctor who came up with the idea of ​​testing her while she was standing who pinpointed the problem, in 2020. A cardiologist confirmed the diagnosis shortly after. 

Her life on pause

Despite her diagnosis, treatments for POT are rather limited and Ms. Bergeron's symptoms refuse to go away.

Although she managed to complete her nursing technique, she has not been able to work for a year, following a final fall at work which caused her a head injury. 

“I'm 23, but inside I feel like I'm 80. I kept that to myself for a long time, it's so hard to live…”, she breathes. “If I'm talking about it today, it's to make this syndrome better known and to prevent other young people from hitting a wall like me.” 

TACHICARDIA SYNDROME POSTURAL ORTHOSTATIC (STOP)

  • Between 0.1% and 1% of the population of developed countries would be affected 
  • Generally affects women, from puberty to young adulthood
  • 50% of patients recover spontaneously after 1 to 3 years
  • Usually caused by immunological stressors such as viral infection, vaccination, trauma, pregnancy, surgery, or psychosocial stress.  
  • Common symptoms: dizziness, weakness, rapid heartbeat and palpitations when standing, headache, “brain fog”, dyspnea, gastrointestinal disturbances and musculoskeletal pain 
  • There are several treatments to reduce the symptoms of the disease, but the most affected patients often remain disabled

Source: Journal of Internal Medicine and Journal of the Canadian Medical Association

A Go Fund Me fundraising campaign was launched by relatives of the young woman to allow her to meet more specialized doctors outside the province.

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