Explaining Pulmonary Arterial Hypertension and Other Rare Diseases

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by Wendy Henderson |

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https://vimeo.com/170026811

This hour-long documentary from Information Television Network focuses on four rare diseases: pulmonary arterial hypertension (PAH), Pompe disease, acute intermittent porphyria and urea cycle disorder.

PAH patients with rare disease subtypes in need of better research and treatment. Find out more.

Rare diseases are often under-researched, difficult to diagnose and hard to treat. Many rare diseases have no cure, and often, no efficient treatments. The film focuses on families who have been affected by these mysterious diseases, as they explain the complicated diagnosis process they had to go through and the treatment they are undergoing.

Debbie Atkinson was a young and active grandmother before she was struck down with pulmonary arterial hypertension, and 35-year-old Jessie Follet was first misdiagnosed with epilepsy before she was given her childhood diagnosis of PAH, find out more about their stories.

Treatments for PAH with connective tissue disease shows promise in two clinical trials. 

Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.


A Conversation With Rare Disease Advocates