Sisters unite, fight rare disease





Learning that a loved one had a serious illness–and was given six months to live–helped Judy Simpson find a new reason to live.


In 1987, Simpson’s sister, Pat Paton, was diagnosed with a rare life-threatening lung disease called pulmonary hypertension (PH). When Simpson was told by doctors to start making funeral arrangements for her sister, she was devastated.


Little did the two sisters realize that this dire prognosis would help them create a beacon of hope for others–the Pulmonary Hypertension Association (PHA), a national resource and support system for patients and their families.


Pulmonary hypertension is caused by high blood pressure in the lungs. It has no known cause and is often diagnosed long after the disease has progressed-usually up to three years after the first signs or symptoms appear.


That’s because the symptoms-shortness of breath, coughing, chronic fatigue, dizziness and chest discomfort (especially during physical activity)-are easily confused with those of other conditions, such as asthma.


At the time of Pat’s diagnosis, there were only a handful of known cases of PH in the country. There are now over 100,000 people in the U.S. known to suffer with PH-discovered in large part because of the PHA’s effort. But because PH symptoms mimic other problems, there may be thousands of individuals with PH not yet diagnosed.


While there is no cure, several new treatments have recently been approved by the FDA and a series of medical breakthroughs are expected in the next decade.


Today the association Simpson and Paton helped start has more than 4,400 members and they have teamed up with WNBA player Debbie Black to increase awareness of the disease.


PHA has benefited thousands of patients across the country, including one of its founders-Paton. She is still alive and with her sister is very active in the fight against PH.


"Many people on this earth never learn why they are here. That is not the case with me," said Paton. "My job is to make the journey a little bit easier for people who suffer with Pulmonary Hypertension."


For more information about PH, call the Pulmonary Hypertension Association at (866)


474-4742 or visit www. phassociation.org.


This story was provided by the North American Precis Syndicate.



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