The last day of February marks Rare Disease Day internationally.
Operations Manager at Giant FM and New Country 89.1 Hilary Montbourquette lives with Idiopathic Angioedema Urticaria. This condition can lead to swelling on your skin, as well as outbreaks of hives on different parts of your body.
As of now, the cause of the disease is still unknown. He says a day to recognize rare diseases is important from an awareness standpoint.
Montbourquette says he’s currently on a trial program in hopes of finding a cure, and is also part of a small community in Niagara of other patients with this disease.
He was diagnosed 5 years ago, but has had symptoms of the disease for roughly 14 years now. Montbourquette says waiting for a diagnosis was a tough time.
Hilary credits Dr. Vipul Jain in Niagara Falls for helping him manage the disease as part of ongoing trials, calling him a godsend. On the trial program, he says it’s been working so far in managing the affects of the disease.
The iconic Niagara Sign will light up in blue, pink, green, and purple on February 28 to mark Rare Disease Day, raising awareness for the one in 12 Canadians living with a rare disease.
Rare Disease Day highlights the need for research, healthcare equity, and support for the rare disease community. It’s estimated that roughly 300-million people in the world have rare diseases.
You can learn more about rare disease day here.
(Written by: Matt Latour)