Family story

Coleen Bethel

My name is Coleen Bethel. When I was twelve years old my mother died of what was then called PPH. My mother was 32 years old. She was a young a beautiful woman who was cut down in her prime. Since then we have lost many family members to what is now called PAH. My cousins, Sameul (25) and Larry (28). My mother’s youngest Aunt... Mary Hall (49), and now my youngest brother Colin (38).

My brother just passed away on March 28, 2008 after being diagnosed three days before he died. He was wrongly diagnosed a year ago with sleep apnea. Although he had that he had more than just that going on and it was not caught. He leaves behind a little one year old son who will now have to go through his life not knowing his Daddy just as my brother went through life never knowing his mother. It breaks my heart but it makes me more determined to find out all I can about this disease now and help prevent us being caught off guard with this terrible disease ever again.

It makes me mad, sick, sad, and scared for my children and the future of my family. We have been told through Columbia University (where my children and I have been in a study for fifteen years) that our gene is a mutated dominate gene. I understand that means more will die. I cannot do much but what I can do, I want helping the cause of finding a cure or more and better treatments than what are available now.

Thank you for your service to the study of this horrible disease and God bless you in your endeavors to help those with this. I look forward to the Conference and all I will learn and take home to my family.


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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.