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The California Life Sciences Association estimates 30 million people, or one in 10 Americans, are living with a rare disease. A disease is defined as rare when it affects less than 200,000 people. Among the cases in America, there are 7,000 known rare diseases. One of them is the incurable pulmonary hypertension, and more specifically, pulmonary arterial hypertension. Behind the Mystery has the inside scoop on this disease and why we should be more aware of it.

What Is Pulmonary Arterial Hypertension (PAH)?

PAH is a chronic and progressive rare disease that affects a heart’s ability to pump blood to the lungs. This is due to high blood pressure in the arteries of one’s lungs. PAH causes the arteries from the heart to the lungs to narrow, which makes it difficult for blood to flow from the heart to the lungs. Without regular blood flow, lungs don’t receive enough oxygen. This puts extra strain on the heart, which makes it harder to pump blood to the lungs. This may lead to symptoms such as feeling tired, fainting, shortness of breath, feeling dizzy, chest pain, rapid heartbeat, swollen stomach, and swollen ankles and knees.

 

PAH Stats

According to the National Organization for Rare Disorders, PAH occurs 3 to 5 times more often in females than it does in males, and generally in females between the ages of 30 to 60. The disease is really a one in a million condition. Only 500 to 1,000 cases are diagnosed each year in the United States, and NORD estimates similar statistics for Europe.

Living with PAH

PAH is a progressive disease, so it’s really important to have open communication with your doctor in order to choose the right treatment. Since asking the right questions will help you make an informed decision with your doctor, here is a list of questions that can help you get those conversations started: https://www.unitedpahsupport.com/pdfs/Doctor-Discussion-Guide.pdf

Every PAH case is different, which is why it’s important to have a strong support system that is knowledgeable of the new and unique challenges this disease presents. There are many communities online and in real life with the purpose of helping people struggling to maintain their health with PAH. If you are living with PAH or are a loved one or caregiver of a PAH patient, here is a great place to start: https://www.unitedpahsupport.com/pah-support/

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