Pulmonary Arterial Hypertension is a rare illness ,it's incurable and there are only a 6 medications currently available for treatment.PAH is actually very hign blood pressure in the lungs.The arteries thicken causing the heart to work harder and harder to pump the blood through the thickened arteries.If left untreated it is deadly.
This illness has symptoms that are so similar to others illnesses that it often gets misdiagnosed.
Shortness of Breath,Fatigue,Bluish tinge to the lips,Dizziness and Fainting are all symptoms of PAH.It effects women 4 to 1.There are approximately 100,000 people in the U.S. that have PH.
I was diagnosed with this "mystery disease" in 1988.At that time there were 150 diagnosed patients in the United States.The information available was extremely limited.There were times when I learned something new about this illness before my doctors.At times we learned together.It was difficult ,there were no medications available .I was put on a blood thinner to prevent blood clots and listed for a heart/lung transplant.Those were my options.
So much has changed since then but we have a long way to go.I want to let everyone know about PH and how it effects so many people.You see there really is no age group and even though woman get it more than men,I know quite a few men with this illness including my own brother Ariel,that passed away in December 2007.He had been dealing with PH for many years and his heart gave out.A massive heart attack was too much for his body to handle.
I also have a younger sister that has this illness and she hangs tough and is a fighter to the core.
So PH Awareness and Advocacy has become my passion.I do it for my brother that didn't live long enough to see a cure .I do it for my sister and myself.That we may live longer and better days.Most importantly I do it for the future PH'ers.The people that already have this disease and don't know it.The people that are fine today and will be diagnosed one day in the future.I have had the blessing of living with this illness for over 20 years.I hope to be here another 20 years,but if not I know I will have had a hand in helping with the future,and the outcome of this illness.If you read this and have any questions,,ask away.If you have any of these symptoms please please see a doctor.There may not be a cure yet,but there are medications that make life with PH totally do-able.I've done for 20 years..
Peace and big ((((((hugs)))))
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I had no idea that your brother and sister were also PHers or that you have been dealing with PH for 20 years.
Thank you for being a trailblazer in developing treatment for this disease.
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