PH Patients for Pulmonary Hypertension

Pulmonary Hypertension Association

Pulmonary Hypertension Association

You may have heard about chronic diseases such as cancer, diabetes or heart disease. Are you familiar with PH, or pulmonary hypertension? Don’t feel alone – although you may not hear about this disease unless you or a loved one develops it, patients from across the nation have pulled together to help others understand this disease, find ways to prevent and cure it, and to provide hope for others through support, education, advocacy and awareness.

According to the PH Association‘s Web site:

Pulmonary hypertension is a rare blood vessel disorder of the lung in which the pressure in the pulmonary artery (the blood vessel that leads from the heart to the lungs) rises above normal levels and may become life threatening.

Symptoms of pulmonary hypertension include shortness of breath with minimal exertion, fatigue, chest pain, dizzy spells and fainting. When pulmonary hypertension occurs in the absence of a known cause, it is referred to as idiopathic pulmonary arterial hypertension (IPAH). This term should not be construed to mean that because it has a single name it is a single disease. There are likely many unknown causes of IPAH. IPAH is extremely rare, occurring in about two persons per million population per year.

Secondary pulmonary hypertension means the cause is known. A common cause of secondary PH are the breathing disorders emphysema and bronchitis. Other less frequent causes are the inflammatory or collagen vascular diseases such as scleroderma, CREST syndrome or systemic lupus erythematosus (SLE). Congenital heart diseases that cause shunting of extra blood through the lungs like ventricular and atrial septal defects, chronic pulmonary thromboembolism (old blood clots in the pulmonary artery), HIV infection, liver disease and diet drugs like fenfluramine and dexfenfluramine are also causes of pulmonary hypertension.

Pulmonary hypertension is frequently misdiagnosed and has often progressed to late stage by the time it is accurately diagnosed. Pulmonary hypertension has been historically chronic and incurable with a poor survival rate. However, new treatments are available which have significantly improved prognosis.

Recent data indicate that the length of survival is continuing to improve, with some patients able to manage the disorder for 15 to 20 years or longer.

To help people understand this disease and to offer support, the PH Association’s Web site offers a variety of tools that can help anyone make sense of this condition that often affects women over age 50. You can find a doctor who is familiar with the condition, clinical trials for new medications, research programs, information that can help with insurance issues and educational programs. The site also provides links to message boards, support groups, online support group chats, listservs and a “Patient-to-Patient Toll-Free Helpline.”

The trials, triumphs and hope of the PH community are reflected in the personal stories of the patients, caregivers, medical professionals and family of those affected by pulmonary hypertension. You can meet some members of this community on the site, and read about the journeys that some patients have taken with this disease over the years.

Dorothy Olson, Teresa Knazik and Shirley Brow founded this association in 1987, and they had 100 members within three years. In 1994 PHA held its first International Conference, attracting 200 attendees from around the country, including 68 patients. Since 1994, PHA has grown to an organization of more than 9,500 patients, family members, and medical professionals as members and an additional 33,000 supporters and friends. Their Web site now receives over 390,000 visits a month.

November is PH Awareness month – and, although this even is more than a month away, this information may help you to understand just one of the many chronic diseases that affect Americans today.

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