Pulmonary arterial hypertension (PAH) is a chronic and currently incurable disease, in which the right side of the heart works harder to pump blood through narrowed arteries to the lungs. Ultimately, this extra stress causes the heart to enlarge, and the heart’s ability to pump blood from the heart through the lungs and into the rest of the body is hindered.
We regularly hear, “but you do not look sick.” That’s not necessarily the case. We use disabled parking because we get out of breath quickly when we have to walk long distances. General activities, like climbing stairs or walking on the beach, can cause us to be out of breath.
We have come a long way since my PH diagnosis ten years ago in September, 2007. Currently, there are 14 FDA-approved medications in the world, but only two are available to me in South Africa. Our goal is to make people more aware of this situation and hopefully to bring more medications and a better quality of life to those affected by this terrible disease.
In August 2008, I made an appointment with Dr. Paul Williams, for a possible lung transplant. When I arrived at the hospital, Dr. Williams told us the South African Medicine Control Council had approved a trial drug, Macitentan, and he wanted to see if the trial medication could work for me before looking at a double lung transplant.