Brad Pritchard | Nov 16, 2011
Bradford resident Ruth Dolan has tasked herself with making every single community in the province aware of a rare and fatal illness most have never heard of – pulmonary hypertension (PH).
Her connection to PH started when her daughter Emily was diagnosed with it four years ago at age 27. It’s a crippling disease that constricts the blood vessels around the lungs, forcing the right side of the heart to overwork itself to pump blood. Over time, it leads to many complications, like extremely high blood pressure, breathing difficulties and extreme fatigue.
Heart failure is the inevitable outcome of this incurable disease, which affects an estimated 10,000 Canadians. Working with the Toronto chapter of the Pulmonary Hypertension Association of Canada, Dolan is doing everything she can to raise the profile of PH, and so far her message is spreading.
In October, the Town of New Tecumseth proclaimed November Pulmonary Hypertension Month, a move that has been followed by other municipalities like Barrie, Essa, and Bradford.
Her efforts are focused on getting the word out to the medical community, so those with PH can get diagnosed and start treatment as soon as possible.
“With treatment, the outlook improves, but getting treatment as soon as possible is absolutely critical,” Dolan said.
“Unfortunately, many cases aren’t properly diagnosed as soon as they could be, making the condition rapidly worse.” This scenario applies to almost every person with PH. Her daughter Emily had signs of the illness throughout her childhood, mainly shortness of breath, but didn’t receive a proper diagnosis until she was in her late 20s.
In 2005, a similar situation played out for Loretta Chu, a Toronto resident and co-founder of the Toronto PH chapter who is now working with Dolan to raise awareness. Chu, an IT professional, was 25 when she found out she had the disease.
“At first I didn’t think it was really such a big deal,” she said, adding that like most she had never heard of PH before. “I didn’t think too much of it, I thought it was related to high blood pressure, something that could be cured by taking simple medication.”
“But it wasn’t the case, I had to go on oxygen, which is a pretty big thing for someone who is young and who doesn’t want to wear a tube on my face,” she said. “That took me a while…to accept.”
Leading up to her diagnosis, her symptoms included the typical signs of PH – swelling of the feet, shortness of breath and fatigue. However, according to Jeanine Harrison, a 20-year nurse practitioner in cardiology currently working at Southlake Regional Health Centre in Newmarket, these subtle symptoms are associated with an array of other less serious medical problems.
“The signs and symptoms of pulmonary hypertension are very subtle, it can be easily diagnosed as something else,” she said. Adding to the complication, PH is often the result of another medical condition. Both Emily and Chu had pre-existing lung conditions.
Harrison admits the medical community stands to benefit from heightened awareness about the rare condition. “It’s not in the forefront of physicians’ minds because the incidents aren’t as high as other lung diseases,” she said.
Progress is being made thanks to a partnership between the medical community and the pharmaceutical industry in Canada. Harrison said they are working on creating better screening tools for PH, which are being made available to general practitioners across the country. Test results can then be sent to specialists in Toronto for further analysis.
“It’s a good way to bring it to the attention of some doctors who wouldn’t initially think of PH,” Harrison said. “It takes out the guesswork for a physician and allows them to use a very systematic approach.”
As these tools become established, Dolan said the best way for doctors to determine if a patient may have PH is to run an echocardiogram to test the pressures inside the heart. “That will give them the clues they need to make a proper diagnosis,” she said.
Chu’s life was never the same after learning she had PH. To help her breathe, she carries a two-litre oxygen tank and breathing tube with her at all times. She considers herself better off compared to other people with PH. Some require larger oxygen tanks, however she can conceal her tank in her purse.
At first, she self-admittedly would “cheat” by not wearing the breathing tube in public. But about two years ago her attitude changed after a trip to Paris when she realized it enables her live a better life.
“On my trip I realized I had to wear the breathing tube. I was able to do more things, I was able to walk further. I felt better physically, maybe not emotionally, but physically,” she said.
While there are treatments available to prolong the effects of PH, because the disease affects so few people, the drugs are extremely expensive, ranging anywhere from $50,000 to as high as $250,000 for a year’s supply. Due to the unique complications in Chu’s case, there is no medication to help with her condition.
Chu continues to lead the best life she can, but she has had to make concessions, working part time and taking days off when her energy levels plummet.
PH sufferers are prone to unexpected fainting, and in March, Chu fell victim to this after she passed out at her home in Toronto after her heart suddenly stopped. It was eight minutes before paramedics arrived on scene. It was barely enough time to bring her back from the brink of death.
Due to the constant threat of sudden heart failure, someone diagnosed with PH is usually only expected to live two to three years. Chu continues to beat the odds, but admits her outcome remains unknown. “I don’t know. The doctors don’t really say or tell you,” Chu said. “I don’t think they really know. I don’t think they can give a specific time.”
Since her diagnosis five years ago, she’s been more active in her health care, asking more questions, which she said is one of the more comforting sides of having PH. “I feel more empowered now than ever before,” she said.
Dolan and her daughter found out about the PH Canada Toronto chapter after they met Chu by chance during a hospital visit about three years ago.
Chu helped form the group shortly after her diagnosis. Living with a rare illness also comes with the stinging sense of isolation, so Chu reached out to find others with PH. Using Facebook, she found three others living in or around Toronto. To this day, the group has grown, meeting formally once a month. Its members come from all over Ontario.
The group has allowed those with PH to come together to talk about their condition, share their experiences and stay abreast about advances in medical treatment and research. The support offered through the group is the most important, says Chu.
“The people in our group are very positive, maybe some people from the outside think the support group is very depressing or dull where people cry…but I think our group is very positive, lots of energy and joyful.”
If you live in Ontario and have PH or want to learn more about the condition, you can visit www.PHAtoronto.ca, call 1-877-7-PHA-CANADA or email firstname.lastname@example.org. New members are always welcome. More information is available through the Pulmonary Hypertension Association of Canada’s website is www.phacanada.com orwww.livingwithph.ca.
Recently, the PH Toronto Chapter, along with Dolan’s brother, Toronto musician J. Paul Adams, recorded song to help raise awareness about the condition. To listen, visit http://vimeo.com/14689378.