Roseanne Huber was like any other 40-year-old woman that had decided to improve her quality of life getting in shape, when, after experiencing symptoms of shortness of breath and a misdiagnosis, the doctors told her she suffered from exercise-induced pulmonary hypertension (PH), an untreatable disease. Eight years later, she explained to the Pulmonary Hypertension Association (PHA) on their blog how they helped her manage the rare and debilitating disease, while not having to abandon her passion for exercise.
“I was nearing 40 when I decided it was time to start exercising. My cholesterol was elevated and I was surrounded with neighbors who participated in many various exercise activities. I loathed running when I was younger, but suddenly found myself in love with it,” explains Huber. However, it was after a year of training that she started feeling an intense difficulty in breathing with exertion, and a decline in her endurance.
She decided to see a pulmonologist who told her she should be happy for being able to run. Even though Huber believed everything was fine, the symptoms did not go away. In fact, they got worse a few months later when her family moved to Rhode Island, and she started experiencing extreme leg fatigue, elevated heart rate, and shortness of breath. By that time, she decided to discuss it with her rheumatologist, Pasha Sarraf from the Massachusetts General Hospital.
“Dr. Sarraf promptly referred me to a pulmonologist specializing in pulmonary hypertension, Dr. Aaron Waxman, at Brigham & Women’s Hospital,” Huber explained. “Dr. Waxman advised me to have an invasive cardiopulmonary exercise test with right heart catheter and nuclear imaging. I soon learned that I had what is called exercise-induced pulmonary hypertension (PH), which meant that the blood pressure in my lungs was made too high by exercise. Unfortunately, as Dr. Waxman explained, exercise-induced PH was not a treatable diagnosis.”
Huber was advised by her physician to try a conservative approach to treatment, which involved being treated with medications indicated for pulmonary arterial hypertension (PAH), and she was prescribed a calcium channel blocker. However, the drugs did not had any effect and the symptoms grew worse — home chores were already a difficult task, along with running. Huber then started being treated with Bosentan, the only oral treatment for PH currently on the market, which was able to improve her quality of life, as well as give her the ability to run four miles without any symptoms.
“Since my diagnosis in 2006, a lot has changed in the world of PH patients like me. There are now 12 FDA-approved medical therapies for the treatment of pulmonary hypertension,” she explains. “Despite this, there is still no cure for pulmonary hypertension. Today I take yet another medication for my PH, but I continue to run. Running keeps me healthy and in shape, and affords me an opportunity to fight back against this terrible disease.”
“Periodically I compete in races, every one of which is dedicated to PH Awareness. I often fundraise for the Pulmonary Hypertension Association (PHA), or run in a PHA shirt. My goal this year was to run a full marathon. I trained through a grueling winter and, in May, I ran the Long Island Marathon. I started the marathon with an injury, but was determined to finish, and I did. I completed the full 26.2 miles not only for myself, but for the PH community,” she added.
In addition, Roseanne Huber is also an active member of the PHA community, and since her diagnosis she has been dedicated to advocating for the disease, as well raising awareness to fight misdiagnosis. She is particularly sensitive to the fact that there are still many patients whose symptoms are confused with asthma or chronic obstructive disease, and she strives for sharing her story so that others may also recognize the need for early detection of the disease.
Therefore, considering that the average time to accurately diagnose PH is 2.8 years, she says that she is “forever grateful to Dr. Sarraf for recognizing this rare and hard to diagnose illness and for referring me to an expert like Dr. Waxman . . . Additional time spent searching for the right diagnosis would have been valuable time wasted, and my PH most likely would have progressed to the point that my health and mobility were severely affected. Quite simply, through Dr. Sarraf’s early detection of the disease and Dr. Waxman’s continued care, I have been able to continue to do what I love, and today I lead a life unaffected by PH,” Huber said.
Since November is Pulmonary Hypertension Awareness Month, the PHA has invited Roseanne Huber to tell her story in order to encourage others to recognize the need for early detection and accurate diagnosis. In addition, there is no cure for the disease, so patients cannot waste time. The association is organizing a series of initiatives within its Early Diagnosis Campaign as a way of targeting diagnostic delays, and optimizing disease care and management.
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