It started with a crisis. I had no mobility, I couldn’t walk. I was like a tree trunk anchored in cement, she says.
She had to go to the hospital, made several visits to the doctor, tests and after two weeks the diagnosis was made.
Mrs. Hampden testifies with a smile that her everyday life consists of chronic pain, muscle tension and unpredictable muscle spasms.
His daily life also consists of medication to manage the muscle tension and general anxiety associated with this syndrome. She has to take it three times a day.
The triggers are often stress, touch, the touch of water, often things that startle us like horns. Things that can make a crisis worse, she explains.
It’s an invisible syndrome. It doesn’t look like I sometimes have trouble walking or that the tension in my lower back is so bad that I can’t climb stairs, she emphasizes.
She explains that it’s not every day, but it can happen at any time.
This mother of three was very active before the illness. She had a full-time job and also earned two master’s degrees. But since the diagnosis of the disease, she has stopped working. It changes a person, she says. We get up in the morning and don’t know what day it will be.
“Some days are better than others. »
— A quote from Taisha Hampden
In Quebec, only seven people suffering from stiff person syndrome are listed by the Regroupement québécois des Maladies Orphanes. A rare disease that affects about one in a million people. Report by Jean-Sebastien Cloutier
Ms Hampden says her condition is fairly stable. I do a lot of meditation, aqua therapy which helps a lot, acupuncture helps a lot. It’s classified as progressive, degenerative, so I use it every day, she says.
When friends and family told her Celine Dion had the same condition, she was surprised because it’s so rare.
But at the same time I know through my experience that it exists and that although it is really rare, one in a million, I am not alone.
“I felt sad for her because it’s a very difficult time to live with a diagnosis of this severity. I wanted to be there for them because not everyone understands. »
— A quote from Taisha Hampden
Due to its extraordinary nature, this disease is little known. Unfortunately cancer, we know it. It’s terrible, but we know it. We do not know the syndrome of the rigid person. I really had to do my own research. Even today, when I meet a doctor, I need to know what I’m talking about because many doctors don’t know who they are.
Taisha Hampden with family members
Photo: Radio Canada
When asked about life expectancy related to the disease, Ms Hampden replied: We’re all going to die. That’s a truth I’ve always accepted. am i ready to go now no
I’m surrounded by people who love me. The people who told me this news today. They are people who love me, who have thought of me and who have said that if Celine announces this, maybe there will be hope for research.
Based on an interview by Jean-Sébastien Cloutier