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Dianne Sauvé sometimes finds herself looking at someone in public – on a bus, for example – and thinking, "I believe this person has it too."
This is acromegaly, a rare condition that can lead to abnormal growth of the forehead, nose, jaw, hands and feet. Caused by a pituitary gland tumor increasing growth hormone, its other symptoms are: joint pain, extreme fatigue, excessive skin marks, headaches, enlarged organs, irregular menstrual cycle in women and erectile dysfunction in humans, sleep apnea, voice enhancement, visual impairment, dental problems and diabetes with no family history. Treatment includes medication, radiotherapy and tumor removal, but there is no known cure.
Before puberty, when the bones of the body merge, it is called gigantism and, in many cases, it is accompanied by a familiar look: patients with the disease include Carel Struycken, who played Lurch in three films of the Addams family; Richard Kiel, who played Jaws in two James Bond films; Tony Robbins, inspirational speaker; and the former wrestler André the Giant.
It is an extremely rare disease – it is estimated that 60 out of a million people have the disease – and even more rarely diagnosed – since only three or four of these 60 people discover that they have it. For Sauvé, it is important for the bus driver to learn that he is one of the people affected, but so far, she has not been able to gather the necessary means to approach a stranger with such an announcement.
Sauvé, a 60-year-old Orleans resident who discovered just six years ago that she had the disease and met another patient with the same illness last spring, became an ambbadador for Acromegaly and formed an awareness and support center in the Ottawa area. network.
Acromegaly Ottawa gave impetus to a project by Montreal photographer Santino Matrundola, who woke up one day with an eye blinded by the disease. Matrundola invited Sauvé to be part of the topics of Light of Day, an exhibition that he planned to raise awareness about the disease. Sauvé, who at that time had never met another person with acromegaly, decided to participate.
"I had been in pain for five years and felt alone," she recalls, "and only have online contacts. So when this opportunity came to be part of this project, I thought "I want to meet other people", because talking to my family, even though she supported me, this It's not like talking to someone who has gone through that. . "
Even in this case, she felt a little fraudulent, her acromegaly having come without any visible pituitary tumor, a condition found in only about 5% of patients. "All the other people I met had the tumor and had to undergo surgery, which is to go from the nose to the front of the brain, near the optic nerve."
Sauvé's Acromegaly diagnosis was made six years ago when an endocrinologist suggested she be tested after discovering she had type 2 diabetes.
At the time, she was exercising with friends, but seemed unable to lose weight. When she approached the issue with her specialist, this raised the possibility that she may have acromegaly. Why so, she said when asked, her feet had grown larger – about one and a half – but she had lowered it to her age and weight. Blood tests were ordered and a high level of IGF-1 hormone, an indicator of acromegaly, was found. The day before Sauvé and her husband left on a cruise in Alaska, she was told that she was probably suffering from the disease, usually accompanied by a benign and treatable brain tumor.
"I'm an optimist, so I got hooked on" benign "and" treatable, "says Sauvé.
In the absence of visible tumor to be eliminated, Sauvé's current treatment includes one injection every four weeks. The drugs have helped, she says: her snoring has dropped considerably and her face seems less swollen than in the past.
Portraits of the exhibition Light of Day by Montreal photographer Santino Matrundola, presenting people with acromegaly, a rare disease. Matrundola, on the upper right, is in state, as Dianne Sauvé, resident of Orléans, in the lower left.
Santino Matrundola
Last June, following the photo shoot in Montreal with other patients with acromegaly, Sauvé created Acromegalie Ottawa on Facebook. "The photo shoot was very emotional," she recalls, "and after meeting people who had one, I wanted to help."
This feeling reappeared in September, during the photo exhibition that accompanied him, when Sauvé was approached by a woman with the disease who was in tears because she herself was not pregnant. had never met anyone with the disease yet.
"I retired from the public service in April," she says, "and I thought, I now have some time for that. I want to do something. "
She encouraged her MP, Liberal Marie-France Lalonde, to speak on this subject in the Legislative Assembly. She is trying to find someone who will champion the cause of a provincial proclamation that will make November 1, Acromegaly Awareness Day in Ontario, just like the statements made in Nova Scotia. Scotland and British Columbia.
One of the problems she faces is that many doctors are unaware of the disease and that people are suffering alone and in silence. As a result, many symptoms of the disease are misdiagnosed as arthritis or fibromyalgia.
Sauvé also printed and distributed information cards to patients at local medical centers and endocrinologists, allowing at least two of the 22 members of his group to register.
"If I did not have support," she says, "there are other patients with acromegaly in Ottawa without support. A guy who has just come forward, it's been 18 years since he has had this disorder anymore, and he's never met anyone either. "
His goal now is to find more patients while acquiring the status of nonprofit charity. "Once you do that, you can sometimes get some funding from pharmaceuticals and others, to be recognized and move to another level."
For more information, type "Acromegaly Ottawa" in Facebook or visit https://www.santinomatrundola.com/
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