By Walter Gowing, Speaks Out – Columns April 3, 2009
Doctor presented with $10,000 to find cure!
“Vasculitis is too rare to be known as a common disease,” said Dr. Simon Carette, of Toronto, while speaking at the annual meeting of the Vasculitis Foundation of Canada in Cambridge.
The organization’s headquarters is located in this city.
Dr. Carette, is the director of the Vasculitis Clinic, University of Toronto, at the Mount Sinai Hospital. His medical specialties cover arthritis and autoimmune diseases. He is the lead researcher on vasculitis.
The Vasculitis Foundation presented Dr. Carette with $10,000 to continue research in the hope of finding the cause and a cure for this horrific disease.
The clinic at Toronto’s Mount Sinai Hospital is the largest of it kind in Canada and serves as a referral centre for Ontario and patients from across the country.
The Vasculitis Foundation of Canada was originally established in Cambridge by a local couple, Donna and Bob Wall, in 1998. It was first known as Wegener’s Granulomatosis Support Group and the organization’s first meeting had 60 people from all over Ontario in attendance. Donna suffered from this disease.
What is the disease? It is a chronic,
uncommon autoimmune, vasculitis disease that affects the body as a whole. It causes inflammation of the blood vessels, especially endangering sinuses, lungs and kidneys. It can start with a cold, bronchitis or allergy-like symptoms that fail to respond to the usual therapeutic treatment.
In some patients, it may begin with arthritic symptoms, skin rashes, eye, ear or throat infections. It can cause blindness.
“Vasculitis is the inflammation of the blood vessels,” said Dr. Carette, “closing the space within them, reducing the amount of blood going to vital organs of the body: the brain, kidneys, lungs and more.”
Dr. Carette placed a high value on the Vasculitis Foundation, as it helps the patient and family members to learn more about the disease and to learn from one another.
“It is important to help families understand things about this very rare disease,” said the doctor.
“Family doctors see hundreds of patients, but only rarely see one with vasculitis.”
He pointed out that medical schools are now including lectures on this topic in training new doctors. The Vasculitis Foundation helps to inform family doctors of the connection between different symptoms that lead to vasculitis and the necessity of steering patients to the right specialist for help.
Donna Wall was elected president of the Foundation at the meeting. She previously held this position from 2001 to 2005.
Carol Moller, of London, is treasurer; Sharon Janushewski, of Whitby, is secretary; Cindy Foster and Bob Wall, both of Cambridge, were elected as board members.
Travolta’s Teen’s Death Puts Spotlight On Rare Disease
When Donna Wall was diagnosed with Wegener’s Granulomatosis a dozen years ago, few friends of the Cambridge woman or even doctors knew much about the disease.
And yet it is the least rare form of vasculitis, an inflammation of the blood vessels manifesting in various forms including Kawasaki disease.
That type of vasculitis has recently been in the news after the sudden death of John Travolta’s son Jett, who had the disease. The teenager died earlier this month after suffering a seizure in the bathroom of the family’s Bahamas vacation home.
“This has brought it to the foreground,” said Wall, who helped found a support organization that became Vasculitis Foundation Canada.
This story opened up the door for Vasculatis Foundation Canada to be interviewed on CTV to dicuss how vasculitis can affect us all.
The Record, Friday, January 16, 2009, Page A10 – by Johanna Weidner, Record Staff
All forms of vasculitis are rare.
Vasculitis is an inflammation of the blood vessels, arteries, veins or capillaries that causes changes in the walls of blood vessels, such as weakening and narrowing.
The tissues and organs supplied by the affected blood vessels then do not get enough blood, which can result in organ and tissue damage and even death. There are various types of vasculitis, classified according to the size and location of blood vessels affected. Some forms improve on their own, others need treatment.
Kawasaki primarily affects young children and infants, and immediate treatment is critical to avoid permanent damage to the coronary arteries and heart.
The 69-year-old Wall wants to raise awareness about Kawasaki disease and the other 14 forms of vasculitis to help people suffering with the illnesses.
“The more we can reach out to these people, the better. We don’t have a cure yet, but we have a lot more medications than we used to,” she said.
When Wall was diagnosed with Wegener’s Granulomatosis, she found other people in the area who also had the disease to form a group.
Although a more common form of vasculitis, it still only affects about one in 20,000 to 30,000 people. Wegener’s disease is systemic, meaning it affects the whole body.
The non-profit group expanded its mandate a couple of years ago, after the international organization decided to go beyond Wegener’s to include all forms of vasculitis.
Vasculitis Foundation Canada has board members – including Wall and her husband who have served as directors since the group’s inception – scattered around southern Ontario, and groups in P.E.I., British Columbia and Alberta. “It’s nice that we have that chain across the country,” Wall said.
People can call the Vasculitis Foundation for information, referrals and just to connect with other people who have the same disease.
Contact the foundation at 1-877-572-9474. For information, go to www.vasculitis.ca