The need for funding as well as awareness about the disease is great, as too many people are dying simply because they don’t know about PH. What these two veterans are doing is an amazing example of how at PHA, we’re putting our heart into finding a cure
Silver Spring, Md. (PRWEB) October 08, 2015
The Rock’n’Roll Philadelphia Half Marathon will serve as a pivotal first meeting and game changer for two women – both U.S. Army veterans – as they combat the same life-threatening disease.
Thirty-four-year-old Jessica Armstrong and 41-year-old Latoynia Ransom-Harvey have Chronic Thromboembolic Pulmonary Hypertension (CTEPH), a form of pulmonary hypertension (PH), caused by old, organized blood clots in the lungs. PH is high blood pressure in the arteries of the lungs that can lead to death from right heart failure. Without treatment, the average survival rate for PH patients is 2.8 years after diagnosis. But because the symptoms, which include shortness of breath, chest pain and fainting, are similar to those in other less threatening diseases, PH is often misdiagnosed. The veterans hope to raise awareness about PH and particularly CTEPH, which, occurs in up to 3.8 percent of patients who suffer from pulmonary embolisms (blood clots in their lungs).
Through the half marathon’s partnership this year with fundraising platform “everydayhero,” the veterans will run to support the Pulmonary Hypertension Association (PHA) as part of the association’s Team O2 breathe™ -- individuals across the U.S. who participate in endurance events to raise funds and awareness to fight PH. PHA provides patient and caregiver support, education programs for healthcare professionals, and grants to help researchers find ways to prevent and cure the disease. Ransom-Harvey is a member of PHA’s northern Virginia support group. Armstrong, who heads PHA’s Early Diagnosis Campaign, reached out to her after hearing that the two of them had so much in common.
Armstrong received her diagnosis months after her deteriorating health cut short her deployment in Afghanistan. Ransom-Harvey’s diagnosis came shortly after she returned to the U.S. from her deployment to Iraq and years after believing her symptoms were due to asthma or allergies and wondering why no prescribed treatments worked.
Aware of the survival rate for PH patients, Armstrong and Ransom-Harvey found renewed hope after completing a right heart catheterization and ventilation/perfusion (V̇/Q̇) scan, two diagnostic tests used to confirm CTEPH. While understanding there is no cure for other forms of PH, the veterans learned CTEPH patients may be candidates for a pulmonary thromboendarterectomy or PTE, a surgical procedure to remove the clots that can significantly reduce or even normalize blood pressure in the lungs. Both women underwent the PTE procedure and remain on medication to keep new clots from forming as they continue to see specialists to monitor their lung pressures.
Armstrong and Ransom-Harvey say the timing for this year’s Rock’n’Roll Philadelphia Half Marathon – rescheduled to October 31 due to the Pope’s visit to Philadelphia – marks a major turning point in their individual CTEPH stories.
“The scariest Halloween I ever experienced was in 2011. That’s when after months of believing I had asthma or some other disease, I was diagnosed with CTEPH, and told it had progressed to the point that I had only five more months to live,” Armstrong said. “Fortunately, I was immediately scheduled for the PTE procedure, which gave me my life back. I'm proud to be running this race for awareness - appropriately on Halloween – and have a chance to give what I raise to PHA for all the work it does to support patients like me.”
For Ransom-Harvey, the Halloween race is the anniversary of her first day as a veteran and the day before she learned how powerful her CTEPH story can be to people unfamiliar with the disease or any other form of PH.
“On October 30, 2013, I was getting my retirement photo taken by a young woman who was struggling to breathe. I asked her about it and when she told me her symptoms, I said, ‘it sounds familiar; it sounds like you have PH,’” Ransom-Harvey said. “Later, she sent me a long email thanking me and telling me that because of what I shared, she was able to pass it on to her doctor. It turns out she did have PH.”
On October 13, World Thrombosis (deadly blood clots) Day, Armstrong and Ransom Harvey will work with PHA to support the International Society on Thrombosis and Haemostatis (ISTH) to make more people aware about CTEPH and other blood-clot related illnesses. The veterans will also use November 17, CTEPH Awareness Day, celebrated during Pulmonary Hypertension Awareness Month, to tell their stories on social media to stress the importance of early and accurate PH diagnosis. PHA’s CTEPH Awareness activities are sponsored in part by an unrestricted educational grant from Bayer.
To mark CTEPH Awareness Day, PHA will use social media to share video clips from Armstrong, Ransom-Harvey and other CTEPH patients. As part of its November pre-anniversary year Pulmonary Hypertension Awareness Month efforts, the association will highlight Periwinkle Pioneers, individuals who have made a contribution to PHA’s success in fighting the disease. On the 17th, CTEPH Awareness Day, PHA will honor Periwinkle Pioneers who have made a contribution to advancing care for CTEPH patients. Over the past 25 years. Periwinkle, which symbolizes the color of some PH patients’ lips and fingers when they lack oxygen, has come to represent hope for the PHA community. From October 13 (World Thrombosis Day – November 17 (CTEPH Awareness Day), PHA will also host CTEPH celebrations and webinars to provide support to CTEPH patients and others who want to learn more about the disease.
“We learned that The Rock’n’Roll Marathon Series has always been about the heart, that it’s from the heart, and it’s full of heart. We are proud that Jessica, LaToynia and so many in our community will participate in Team O2 breathe endurance events to support PHA,” said Rino Aldrighetti, PHA’s president and CEO. “The need for funding as well as awareness about the disease is great, as too many people are dying simply because they don’t know about PH. What these two veterans are doing is an amazing example of how at PHA, we’re putting our heart into finding a cure.”
To support the veterans’ fundraising, which is getting a kick start from a pledge of support from Bayer, please go to: https://rocknrollphiladelphia2015.everydayhero.com/us/bust-cteph for Armstrong and
https://rocknrollphiladelphia2015.everydayhero.com/us/latoynia for Ransom-Harvey.
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 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 PHAssociation.org.