Diane’s walk will go a long way in furthering research and raising awareness so that more people know about PH sooner rather than later.
Thomasville, NC (PRWEB) October 02, 2015
Thomasville’s Diane Ramirez, one of the longest-living survivors of a misunderstood and too-often misdiagnosed disease, will embark on a 75-mile, 30-day walk for awareness and a cure.
Twenty-eight years ago, doctors diagnosed Ramirez, now 52, with pulmonary hypertension (PH), high blood pressure in the arteries of the lungs, an incurable disease that can lead to death from right heart failure. She recalls a doctor telling her she would never have children (women with PH have a high risk of morbidity and mortality during pregnancy) and that she should get her affairs in order. At the time, with no treatments and little hope for survival beyond perhaps a heart and lung transplant, doctors gave her less than two years to live.
Because the symptoms of PH, which include shortness of breath and chest pain, are similar to those in other less-threatening diseases, it is often misdiagnosed, for example, as asthma. Without proper treatment, the average survival rate for someone with PH is 2.8 years after diagnosis. Ramirez hopes her story will help extend and improve the lives of those affected by PH and get more people to know about the disease so they can get an accurate diagnosis before it’s too late.
As a participant in drug studies and a member of the Pulmonary Hypertension Association(PHA), where she now serves as a member of the Board of Trustees, Ramirez has already played a major role in advancing PH care. PHA, which marks its 25th anniversary in 2016, provides support for patients and caregivers, awareness and advocacy, medical education, and research to find ways to prevent and cure PH. There are now 12 PH treatments and PHA last year launched an accreditation program for Pulmonary Hypertension Care Centers (PHCCs). Ramirez will donate money she raises in her walk to support the new PHA Patient Registry (PHAR), which will enable researchers to track PH diagnostic and treatment patterns at a national level.
“I’m grateful that the combination therapy I’m on today makes it possible for me to exercise daily and for my doctors to give me the OK to complete this 75-mile walk. At the same time, as a North Carolina PHA advocacy leader and support group member, I know first-hand that simply breathing is a struggle for many of my fellow patients,” Ramirez said. “The PHAR will work with the PHA’s newly-accredited PHCCs to collect much-needed data to build the foundation for the next generation of research that will lead to a world without PH.”
Ramirez will start her walk Oct. 6 in Thomasville and will continue adding miles through Nov. 6 during Pulmonary Hypertension Awareness Month when she will cross a periwinkle finish line. Periwinkle is symbolic of the color of the lips of some PH patients when they lack oxygen and for the PH community has come to represent hope and empowerment. Throughout the walk, Diane will be joined by PHA support group member patients and caregivers, and PH healthcare professionals from North Carolina.
"Diane’s walk will go a long way in furthering research and raising awareness so that more people know about PH sooner rather than later,” said Rino Aldrighetti, PHA's president and CEO. "What Diane is doing now and all that she has done in her effort to conquer PH is a perfect example of what PHA is all about, where collectively, we’re putting our heart into finding a cure.”
To support Ramirez by donating to the PHAR, please go to http://www.PHAssociation.org/GiveNow.
About the Pulmonary Hypertension Association
Headquartered in Silver Spring, Md., with a growing list of chapters across the country, the Pulmonary Hypertension Association (PHA) is the country’s leading pulmonary hypertension organization. Its mission is to find ways to prevent and cure pulmonary hypertension and provide hope for the community through support, education, research, advocacy and awareness. PHA does this by connecting and working together with the entire PH community of patients, families and medical professionals. PHA relies on donations to fund its many programs, including early diagnosis efforts, more than 245 support groups around the country, and continuing education for medical professionals offered through PHA Online University. For 12 consecutive years, PHA has received the highest rating — four stars — for fiscal accountability and transparency from Charity Navigator, placing it in the top half of one percent of all rated charities. For more information or to support PHA with a donation go to http://www.PHAssociation.org.
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