Alberta Wright lives in Detroit, Michigan, where she leads the Pulmonary Hypertension Association’s Detroit Support Group. She works fulltime as a teacher’s aide and attends church every Sunday. In her spare time, Alberta enjoys spending time with her family, reading books and playing Candy Crush.
By Alberta Wright
I was diagnosed with idiopathic pulmonary arterial hypertension (IPAH) in June 2018. I had shortness of breath and swollen ankles and feet for almost a year and a half before diagnosis. I spent almost four weeks in the hospital, and my diagnosis didn’t hit me until I was released from the hospital.
When I found out I had pulmonary hypertension (PH), I was shocked. But PH was no stranger to my family. My sister died from PH in 1980, as did her daughter, my niece, in 2013.
My oldest sister, Brenda, was diagnosed with PH in 1975 when she was 20 years old. She was married and had two kids. I was 9 years old when my sister started to get sick. At the time, I knew nothing about PH. But I remember the doctors said Brenda wouldn’t live to be 26. Back then, medicine wasn’t advanced like it is now. She died in July 1980, just 18 days before her 26th birthday.
My niece, LaShawn, was born with two holes in her heart, and she had open heart surgery at 2 years old. She was 6 when Brenda died, and my nephew was 8. In 2007, at 33, LaShawn had surgery to repair a leaky heart value.
Doctors discovered that she had PH and blood clots in her lungs that were too deadly to remove. My family and I were devastated that PH came back to affect another loved one. LaShawn lost her battle with PH in December 2013. She left behind four kids.
My sister never got the chance to experience the help that I receive today. It’s important to raise PH awareness because PH is often misdiagnosed, and it’s a disease that can go unnoticed. Raising awareness helps people living with PH and those who haven’t been diagnosed. I get hope from knowing that medicine for PH is advancing daily and that you can live a long life with the right medicine.
I joined PHA’s Facebook support groups, and administer one of them. I get hope from meeting new friends in the PH community, and I believe that one day there will be a cure for PH.
My support team includes a sister, my pastor, my church and my doctors. I take one day at a time, I live life to the fullest and I take nothing for granted. It hasn’t been easy living with PH, but it has gotten better.
Alberta shares her story in connection with American Family Month, which is observed between Mother’s Day in May and Father’s Day in June. If you have a genetic form of PH, or want to share how PH has affected your family, submit your story to the PHA’s Right Heart Blog.