Rare disease topic of info session
Jason Doucette’s mother Linda died with scleroderma in 2012.
Living in Tusket, Yarmouth County, he says his mother never encountered anyone else with scleroderma as she battled the disease and the resulting Pulmonary Arterial Hypertension.
Doucette doesn’t want others to face a similar battle alone. Following his mother’s death, and now living in Halifax, he became involved in the Run/Walk for Scleroderma and subsequently became President of Scleroderma Nova Scotia. He’s currently president-elect of Scleroderma Canada.
“Although our organizations represent a rare disease, we are firmly committed to improving the lives of those living with scleroderma,” he says.
And they are also to spreading information, says Doucette.
The Scleroderma Society of Nova Scotia will be hosting a public information session in Yarmouth on Saturday, Oct. 13 at 1 p.m. at the Yarmouth library.
“This will be an excellent opportunity for those living with scleroderma, and for everyone who is interested, to learn more about the disease and to hear personal experiences from others who live with scleroderma,” Doucette says. Everyone is welcome to attend. Registration is not required.
“Please join us as we raise awareness of this rare auto-immune disease,” says Doucette.
Scleroderma – it’s a hard word to pronounce and even harder to live with. This rare auto-immune disease – which literally means “hard skin” – can cause thickening and tightening of the skin, as well as serious damage to internal organs. There is no known cause and no cure.
The Scleroderma Society of Nova Scotia says scleroderma is hard for researchers to understand and for health care professionals to treat.
It is also so rare that in Nova Scotia patients may never encounter anyone else with the disease. Approximately 200 patients live with Scleroderma in this province, many in rural Nova Scotia.
The Oct. 13 public information session will provide education, share patient experiences, and seek feedback on how to better serve the needs of patients in the local area.
“This session will allow those living with scleroderma in the Yarmouth area to enhance their knowledge of the disease and to hear from others who are living with scleroderma” says Doucette. “The session will also provide health care professionals and members of the general public the opportunity to learn more about the disease, which can have severe negative impacts to those living with scleroderma.
“Our society has taken the opportunity to visit many rural communities, raising awareness and ensuring that those living with scleroderma are aware of the supports available to them,” he says.