November is Pulmonary Hypertension Awareness Month!
Dear Family and Friends,
As most of you are aware, Emma has 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 the heart. Untreated, PH is incapacitating and sometimes fatal." 1
Pulmonary Hypertension is extremely rare affecting an estimated 20,000-30,000 people (about 0.01% of the population) in the United States, only a small percentage of which are children. 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 visability with the media.
Many doctors have heard of PH but don't know a lot 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 cathaterization. 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.
As with all diseases, much of the research performed has been oriented towards adults. I would like to focus on the pediatric side of this disease and ask you to help by contributing to the Robyn Barst PHA Pediatric Research Fund. Dr. Robyn Barst is one of the leaders in the Pulmonary Hypertension community and has dedicated 30 years to fighting this disease through her research and treatment of patients. Dr. Barst has taken part in clinical trials for every PH medication that is currently FDA approved. Please help me to continue her efforts.
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.
Thank you for visiting my fundraising page!
Please give as much or as little as you can to help us (PH)ight 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.