Team Phenomenal Hope, a nonprofit group composed of medical and athletic professionals that uses endurance sporting events to spread awareness about pulmonary hypertension (PH), has just returned from a seven-day trek along the Southern Alps, and is now planning its next lap in the journey against the disease.
The team sent several members to New Zealand earlier this month to compete in The Pioneer bicycle race, raising more than $16,000 to support PH causes, before returning home — appropriately — for Rare Disease Day 2016 (Feb. 29).
“We want to use this day to tell the story of our patients … they’re the champions in this fight,” Dr. Patricia George, a pulmonary hypertension specialist at University of Pittsburgh Medical Center (UPMC) and a founder of Team PH, said in a news release. “Whether we’re cycling, running or competing in triathlons, our main mission is to raise money for research and honor the people we service day-in, day-out. We’re their biggest fans.”
PH is an increase of blood pressure in the pulmonary artery, pulmonary vein, or pulmonary capillaries, together known as the lung vasculature, that leads to shortness of breath, dizziness, fainting, leg swelling ,and other symptoms. PH can be a severe disease with a marked decrease in exercise tolerance.
In the United States, PH affects hundreds of thousands of individuals, with many more who are undiagnosed. About 200,000 hospitalizations occur annually in the U.S. with pulmonary hypertension as a primary or secondary diagnosis, and about 15,000 deaths per year are ascribed to the disease.
When it progresses, PH can lead to heart failure, and some patients require lung transplantation. As Dr. George noted, the Rare Disease Day 2016 is another opportunity to educate the public, as well as policy makers, about a disease that often goes unrecognized or misdiagnosed.
“The average life expectancy is three years after diagnosis,” Dr. George said. “We’re at a critical point when it comes to pulmonary hypertension research, and now’s the time to apply a full press.”
Since Rare Disease Day was launched by EURORDIS and its Council of National Alliances in 2008, thousands of events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage.
An upcoming Team PH event is the third annual 5-kilometer run or 1-mile walk to find a cure for pulmonary hypertension, set for April 10 in Pittsburgh, Pennsylvania.