MURPHYSBORO — A local group is trying to get the word out about a little known disease that, although rare, may be more wide spread than commonly thought.
The Pulmonary Hypertension Support Group wants to raise awareness about PH, continuous high blood pressure in the lungs. The chronic disease has no cure and can lead to heart failure if left un-treated.
“This is a disease that often goes undiagnosed or misdiagnosed,” support group leader Karen Crow of De Soto said. “A lot of people confuse it with high blood pressure but it is different. It’s not something you can take a pill for. It’s not that simple; it’s not simple at all.”
The disease can go undiagnosed for months, even years, as some sufferers may initially put their symptoms down to other causes. Once they do go to a doctor, they may not get the accurate diagnosis right away because so many doctors are unfamiliar with the disease, she said.
Many patients are diagnosed at first with asthma, emphysema or other illnesses.
“I was short of breath when climbing stairs or inclines and had lots of dizziness afterward. My legs started swelling and turned blue. My primary care doctor thought I had a blood clot and ran all kinds of tests. It took months to get the diagnosis,” she said.
Diane Moore, registered nurse with St. Joseph Memorial Hospital’s cardio-pulmonary rehabilitation, said Crow’s experience is not uncommon.
“Most people have the symptoms for a year or two before they are correctly diagnosed,” she said. “If you have only one or two symptoms, like shortness of breath, you think it’s no big deal. You think it’s because you are out of shape or overweight or getting older.”
Some physicians don’t think to look for the disease, Crow’s husband Jesse said.
“Doctors hear hoofbeats and look for horses. They don’t look for zebras,” Jesse Crow said. “Pulmo-nary hypertension is a zebra. If they knew about it, they would see zebras instead of just horses.”
While there is no cure for PH, symptoms can be managed and the disease’s progress slowed. Support group member Rebecca Blackwell of Carbondale was diagnosed in 2007. Her treatment includes medi-cations and oxygen.
“I don’t get around like I used to but I’m better than I was,” she said.
The group hopes raising awareness about PH will help others who may have undiagnosed PH, educate doctors about the disease and promote understanding of pulmonary hypertension.
On Twitter: @beckymalkovich