Woman advocates for more awareness, funding
HALIFAX — Beth Slaunwhite had been living with pulmonary hypertension for years, but she didn’t know it.
The Halifax woman had some of the condition’s symptoms: shortness of breath, tightness in her chest and swelling in her feet and ankles.
“If I was walking up the stairs, there was no way I would be able to talk to someone at the same time,” Slaunwhite said in an interview.
Slaunwhite said she knew her health was different compared to other people, so she went to her doctor for answers.
From there, she was sent for pulmonary function tests but they didn’t indicate anything was wrong, so she was sent to a respirologist who told Slaunwhite she had exercise-induced asthma.
But Slaunwhite said a few years after she was given that diagnosis, she was still getting worse.
“I was baking one day and I had to go lie down in the middle of it. It was unbelievable. I had to call my husband home and said, there’s something so wrong with me. I’m really not doing well,” she recalled.
Slaunwhite said her heart rate was through the roof. When she was at work two days later, the same thing happened. She finally decided to go to the emergency department. There, she was told she was having angina.
When Slaunwhite was unable to see a cardiologist, she was sent home and told to come back if anything changed.
“I was sucking on the nitroglycerin but the doctor said I should only have to use it twice,” she said.
So back to the emergency room she went.
“I went to emerge and my heart rate was really low – it was only 34 — so they actually kept me because of that,” Slaunwhite said.
She saw three different workers from cardiology. Eventually, a resident took her down the hall and suggested she get an echocardiogram, also known as a cardiac ultrasound.
It was after the echocardiogram that she was diagnosed with pulmonary arterial hypertension, a condition that affects the blood vessels in the lungs.
“Unbelievable,” Slaunwhite said, reflecting on her diagnosis. “The first thing I should have had years ago was an echocardiogram.”
Eight years later, Slaunwhite has learned to live with pulmonary hypertension
and considers herself lucky.
According to a study published in the Lancet Journal in 2022, patients with pulmonary arterial hypertension have a poor prognosis, with a median survival after diagnosis of about five years.
Slaunwhite has since been advocating for people with pulmonary hypertension to have a better experience from before they’re diagnosed to their following care.
“I would love to reach medical schools because rare diseases are zebras,” she said.
“Doctors are taught in school to look for the obvious first, but this was the problem. They kept looking for the obvious and it wasn’t the obvious.”
Slaunwhite said she also hopes to see more funding for pulmonary hypertension, a condition that affects roughly one per cent of the global population, and other rare diseases as medications are typically quite expensive.
And not only are the medications expensive, but Slaunwhite said travelling to a pulmonary hypertension clinic can also be expensive for people who live in rural areas.
Although Slaunwhite sees many areas where there could be improvement, she said “we’ve come a long way.” For example, she said when she was diagnosed, there were only two genetic markers. Researchers have since found a lot more.
Slaunwhite, a board director of the Pulmonary Hypertension Association of Canada, said there’s also plenty of support for people who have been diagnosed.