As most of you are aware, my mother (Mary Jo Piatek) passed away in July of 2013 due to a disease called Pulmonary Hypertension, or PH, which is "abnormally high levels of blood pressure in the lungs that places an excessive load on the heart. Untreated, PH is incapacitating and sometimes fatal." She was diagnosed with Idiopathic (no known cause) Pulmonary Arterial Hypertension in early 2010 but may have had it already for a few years. She was later diagnosed with a second disease: Scleroderma. Once diagnosed, her life went from being a busy wife and mom working full-time, to being on a life-saving drug that had to be administered intravenously (IV line directly to her heart) along with being connected to oxygen 24/7.
Pulmonary Hypertension is extremely rare affecting an estimated 20,000-30,000 people (about 0.01% of the population). The exact number is not known because it can be associated with other diseases. Rare as it is, PH does not discriminate. It affects people of all ages, races, and ethnicities. And, as a rare disease, it attracts much less attention and financial aid from the government, pharmaceutical companies, and the medical community in general than other more common diseases, nor does it have the visibility with the media.
Many doctors have heard of PH but don't know much about it. The symptoms, such as breathlessness, chest tightness, limited exercise capacity, and fatigue are common with many other conditions. At the beginning of the disease, generally, the symptoms are only exercise induced. Therefore, PH often goes undiagnosed, or more commonly, is misdiagnosed as asthma, lack of physical fitness, or COPD, among other things. Diagnostic testing for PH is often fairly involved requiring a cardiac echo, EKG, and for conclusive results, a right heart catheterization. As a result, people can go for years without proper treatment, which could be fatal.
In 1995 a person diagnosed with PH was told they had a maximum of three years to live. Today, fortunately, that lifespan has increased with the introduction of many new treatments that help to stabilize patients for much longer periods of time. However, there is still no cure. We all stay in faith and hope that one day there will be a cure.
On September 22nd, 2019, I will be running my 11th marathon in honor/memory of my Mom. She fought so hard each day during her battle with PH that it makes running 26.2 miles seem like a very simple task. She continues to be my inspiration everyday as I'll always remember how she took on the disease with such resiliency. She was loved and adored by so many as she was ALWAYS in a good mood and brightened everyone's life that she was a part of.
Team PHenomenal Hope does a wonderful thing through its "#Let Me Be Your Lungs" Campaign by matching an athlete with a Pulmonary Hypertension patient. This year I'm greatly honored to run for Benita Kosiara. Not only does Benita battle this disease on her own, she also runs a PH Support Group based in Elmhurst Hospital to give hope, guidance, and community for others with the disease. Benita was an instrumental figure in my Mom's life during her last few years on the planet. She provided my Mom with counsel on living with the disease, support to make her feel less alone, but most importantly love and friendship.
As a charity, Team PHenomenal Hope seeks to: raise awareness of Pulmonary Hypertension, fund medical research into improved treatments for a cure for those who suffer from it, and implement programming that focuses on providing patient services, including removing patients from isolation, building community, and providing hope. Their link: https://www.teamphenomenalhope.org/
If you would like to learn more about Pulmonary Hypertension and spread the word to help make people aware of this devastating disease, please visit www.phassociation.org or www.pah-info.com. Please give as much or as little as you can to help us (Team PHenomenal Hope) fight for a cure!
Donating through this website is simple, fast, tax deductible, and totally secure. It is also the most efficient way to support my fundraising efforts. Many thanks for your support -- and don't forget to forward this to anyone who might be interested in donating.