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Pulmonary Hypertension
By Ada Hawkins
It’s rare. It’s incurable. It’s often fatal. It’s like “high blood pressure” of the lungs. It is pulmonary arterial hypertension, a lung disease that can affect a person of any age. Referred to both as pulmonary arterial hypertension (PAH) or pulmonary hypertension (PH), this disease is a rare blood vessel disorder of the lungs. Pressure builds in the pulmonary artery (the blood vessel leading from the heart to the lungs), and when it rises above what is considered “normal” levels, it can become life threatening. Left untreated, PH can lead to heart failure and death within 2-3 years. There are approximately 100,000 people who are known to have PH, and everyone from babies to the very elderly has been diagnosed with pulmonary hypertension. Because symptoms can develop gradually, many people delay seeing a health care practitioner. Typical symptoms of PH include: shortness of breath with just minimal exertion; chest pain; dizzy spells/fainting and fatigue. If PH occurs in the absence of known causes, it is referred to as idiopathic pulmonary arterial hypertension (IPAH). But IPAH itself is extremely rare, occurring in only about 2 people per million in a given year. PH has been linked to certain drugs such as Fen-Phen (a diet drug that is no longer on the market), cocaine, amphetamine and methamphetamine. It can also be linked to liver disease, HIV, autoimmune diseases like rheumatoid arthritis, lupus, scleroderma, and even sleep apnea. PH can be caused by congenital heart and lung defects and can also be familial. As PH progresses, many patients cannot be without a 24/7 oxygen supply. Approximately 6 drugs have been FDA-approved for the treatment of PH, but they are very expensive. Because PH is frequently misdiagnosed, the disease has often progressed to latter stages by the time an accurate diagnosis has been made. There has been a poor survival rate. But…..there is hope—new hope! Through research, new treatments are now available, significantly improving the prognosis for many patients. New data shows that the length of survival continues to improve. Some patients have even been able to manage PH for 15 to 20 years or longer. This past November was PH Awareness Month across the United States. The PH community may be small, but the enthusiasm, dedication, courage, and abundant spirit are big beyond measure! Support groups around the country really make an impact and together, all of the people involved create hope for one another. There are dozens of ways to raise awareness and join the battle for a cure for PH. The official web site – www.phassociation.org – has an “action kit” that contains tips for various awareness-raising opportunities. These opportunities do make a difference to those who are afflicted with PH. Action can be taken through advocacy, fundraising events, the media, and community education. . A book entitled "Pulmonary Hypertension: A Patient’s Survival Guide" is a wonderful resource for those who have this disease. Written by Gail Boyer Hayes, herself a PH patient, the book candidly discusses delicate and difficult subjects including life expectancy, the possibility of family members inheriting the disease and the risks of various treatments. The book also, however, can alleviate many fears about PH. It includes anecdotes about how other patients have coped with their situations and also offers suggestions about how to make life easier for the patient and their caregivers. Other vital topics include how to obtain free legal help as it pertains to dealing with various government agencies and obtaining insurance coverage. Then there is an entire chapter devoted to PH and children. How can you help? Take Action! Contact your elected officials. Make sure that leaders at every level of government know the personal story of at least one PH patient. From the PH Research Act to airline oxygen accessibility, speak out on issues that matter. Together we can make a difference. Help bring about awareness in the community. Give a talk, create an exhibit or have your city or state issue a proclamation that recognizes PH Awareness Month. Try a town hall, local hospital, a community center or a library. The town hall could be a place to give a talk. Local libraries or community centers will usually allow displays to be set up. If so, be sure to include posters, the book "The Patient’s Survival Guide," brochures, or any other items that be may be useful. Then make sure these actions get listed on the PHA web site. The pulmonary hypertension tunnel can be long. But everyday, more and more light is beginning to shine through.
PH web site: www.phassociation.org
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This intel was contributed by Oceana
Oceana
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February, 2012
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