'It's a difficult disease to diagnose': Annual event raises awareness about pulmonary diseases
CALGARY -- Pulmonary Hypertension (PH) is a disease that impacts how oxygen enters the blood system and the rare disorder can often be hard to diagnose.
The problem is that its symptoms mimic other more common ailments.
"I got diagnosed on March 13th, 2020, which was the day of lockdown, so it was kind of like bam, bam," said Kathryn Downey, whose symptoms started about seven years ago.
Downey is in her 50s and now breaths with the help of an oxygen tube. She says she wasn't getting much help from doctors when her symptoms began.
"The heart specialist said I think you have asthma," said Downey. "So there you go, she didn't know anything about pulmonary hypertension, she was almost going back to the beginning and saying I think it's asthma, we'll take care of that."
Downey was constantly short of breath and fatigue was an issue. That's when her frustration came to a head.
"You snap because you start feeling that you're a hypochondriac but you know that you can't walk about 25 feet without having to stop," said Downey.
That's when she decided to take matters into her own hands and research her symptoms.
All her markers pointed to PH and the most rare form pulmonary arterial hypertension (PAH), which is a progressive disorder, resulting in high blood pressure in the arteries of the lungs.
"Had I gone a little bit longer than I had," said Downey. "I probably could have ended up dead so I was pretty bad when they finally figured it out."
Jamie Myrah is the executive director of the Pulmonary Hypertension Association of Canada and May 5th was world PH day.
It's an annual event to raise awareness about the disease and Myrah says it's frequently misdiagnosed.
"The average life span without treatment is only two and a half to three years," said Myrah. "It can take that long sometimes for a diagnosis to take place, it's a difficult disease to diagnose with symptoms that are common to other more common conditions."
PH impacts people of all ages and genders but with early and accurate diagnosis, proper treatment can extend and improve PH patients’ quality of life.
People who think they might have PH should seek diagnosis and treatment from a PH specialist.
Symptoms include chest pain, fainting, swelling of the arms, legs, ankles or abdomen, dry cough and Raynaud’s phenomenon.
"Hope is alive and well for the PH community," said Myrah. "We're making progress in helping people live better with this condition."
Learn more about PH HERE.