2023-06-21 15:30:00
After 15 years of suffering in the legs and the incomprehension of regarding fifteen doctors, a young woman who paid $80,000 was finally treated in Spain for lipedema, which is not recognized in Quebec.
“I never had a listening ear. I understand that doctors only have a few minutes, but the health system is sick, deplores Janie Therrien-Migneault. It has to be recognized.”
The 29-year-old woman has lipedema (also called “post legs”). Unrecognized in Canada, this little-known chronic condition might affect 10% of women worldwide, according to estimates in the United States and Europe.
What is lipedema?
– An abnormal accumulation of fat that affects the legs and arms
– Limbs are disproportionate, often symmetrically
– Symptoms are: pain, cramps, bruising, abnormal tenderness
– It is a chronic progressive disease that almost exclusively affects women
– Diet and sports activity are beneficial, but useless to lose weight
– Appears with hormonal changes (puberty, pregnancy, menopause)
– A genetic predisposition might be involved
– Two treatments are suggested: bariatric surgery and liposuction
– Condition recognized by the World Health Organization
Source: Lipedema Foundation, USA, Lipedema France
In the case of Janie Therrien-Migneault, the first symptoms appeared at the age of 12.
Pain and swelling
“I had problems with my legs and arms, which were swelling. But we didn’t know what it was,” recalls the one who danced for several years.
Quickly, the symptoms worsened: swollen legs, bruising, pain, bumps. Despite this, it was impossible to obtain a diagnosis or help from a doctor.
“I had to see regarding fifteen different doctors… I paid privately. I went everywhere, she says. They told me to exercise more and eat better. I’ve been on diets all my life, I’ve never lost weight,” she says bitterly.
“It’s really a tough illness psychologically,” adds the Gatineau resident.
This woman’s story is not unique. On social networks, dozens of desperate Quebec women say they are misunderstood by doctors, and victims of grossophobia.
“It’s terrible, it’s an obstacle course,” says Irlanda Espinoza, a Montrealer who created a group on Facebook in 2019.
Moreover, it was on the internet that Janie Therrien-Migneault had a revelation two years ago, following reading a testimony from a Frenchwoman with this condition.
Determined to seek treatment, she obtained two diagnoses of lipedema from two doctors abroad: in Morocco and Spain.
Like a revelation
“It was like a revelation. […] Knowing that it’s not in my head, that I didn’t dream… After all the years where I was told that it was because I ate badly, [apprendre] that it is a disease, it is a relief.”
In 2021, the woman underwent liposuction surgeries in Spain, with a specialized technique for lipedema (WAL). She went there four times, spread over eight months; the operation was too hard physically.
“If I wanted to be able to still walk at 50, I had no choice but to treat myself,” says the woman who paid $80,000 in total.
In all, more than 20 liters of adipose tissue (diseased fat cells) were removed from his legs and arms.
Janie Therrien-Migneault, 29, underwent four private liposuctions in Spain in 2021-2022 for her lipoedema problem, for which she might not get treatment in Quebec. She paid $80,000. COURTESY Janie Therrien-Migneault Courtesy Janie Therrien-Mignea
“It’s heavy for a long time,” comments the patient who works in finance in Ottawa.
Although surgery does not cure lipedema, it does restore a more normal figure and quality of life.
“My legs don’t hurt anymore! she swears, following 15 years of suffering. But the doctor can’t say you’re 100% cured. It’s not a miracle.”
Photo of her legs following liposuction surgery. He had 14 liters of fatty tissue removed from his thighs. Courtesy Janie Therrien-Mignea
Even if this investment forced her to put her house purchase project on ice, she has no regrets.
Bombarded with messages
Since she spoke regarding her story on social networks, she says she is inundated with messages from women everywhere who want to have information.
“I find it sad, absurd. I would have liked to meet someone like me, I feel obliged to give answers, ”she admits.
Since she lost all this liquid, Janie Therrien-Migneault would like to benefit from cosmetic surgery to redrape her hanging skin. She should also have lymphatic massages every week. But his budget does not allow him all this. If she wants one thing, it’s for the disease to finally be recognized, and for women to get help.
“It has to be recognized,” she repeats. I hope it will unlock one day.
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