A community was engaged and awareness was raised as the Pulmonary Hypertension Association of Canada held its first ever forum for Alberta patients with the disease.
A rare, but complex and serious lung disease, it’s progressive and potentially fatal. It’s defined by high blood pressure in the lungs, which leads to enlargement and weakness in the right side of the heart.
The forum was held on Saturday at the Radisson Hotel in Red Deer.
Ted Earl, 71, drove all the way from Drumheller to the attend the forum, and he has been suffering with the chronic disease for almost four years.
“I can breath really hard, but nothing happens. All the blood vessels in my lungs are hardening, so now I need supplementary oxygen just to keep me going,” said Earl.
Life for Earl has definitely changed in the past fews years and it’s not getting any easier.
“There’s just no more energy in me. I’ve lost 35 pounds in the last year and a half, and everyday is getting harder and harder. I just keep doing what I can, but it’s not easy,” said Earl.
The event featured a presentation from Kristen Lambert, a registered social worker with Alberta Health Services, on developing support systems for those coping with the illness.
“It’s about bringing people together with PH, raising awareness and forming a larger collective voice. There’s a lack of education around it, and a lot of ignorance. It’s important to understand that there are multiple people going through this with shared experiences,” said Lambert.
Through all his struggles, Earl said he’s lucky to have such a strong support group around him, he said.
“My family has been terrific. My wife has been my biggest supporter, and my children have been wonderful. If it wasn’t for them, things would be extremely difficult for me,” said Earl.
According to PHA Canada approximately 5,000 Canadians have been diagnosed with PH. It can strike people of all backgrounds, ages and genders.
There is no cure for the disease but with treatment, many patients are living longer and healthier lives. For more information visit www.phacanada.ca.
jonathan.guignard@www.reddeeradvocate.com