30 Days of PH: Familial PH

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by Jen Cueva |

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Day 19 of 30 Days of PH⁣ ⁣Topic: Familial PH ⁣ ⁣This is Kari’s story @karijersey ⁣ ⁣ In 1999, my family and I were introduced to PH. My mother was diagnosed at the age of 35. At that time, that weren’t very many options for her. The doctors told us that her case wasn’t hereditary. But my sister and I got checked around the ages of 15 and 16 just to be safe and were in the clear. Sadly, my mom passed away in 2007 when I was just 21.⁣ ⁣ ⁣ On June 11, 2016, my then 3-year-old, Ophelia, passed out at her birthday party. We immediately called the ambulance and were rushed to Strong Hospital in Rochester, NY, where we spent two weeks before being transferred to CHOP. She was diagnosed with PH. We were completely shocked by this news. PH had crept into our lives again. ⁣ ⁣ ⁣ They asked if I had been tested, I was diagnosed with PH a month later. I truly felt like our lives were shattered. I was angry, confused, devastated, and incredibly worried about what the future would hold. Especially for my baby, I kept thinking, “ “She’s so young. I’ve seen what this disease can do. Surely she won’t have much time”. The first year was a roller coaster for my husband and I, but we have amazing family and friends that have been there for us every step of the way. That makes all the difference in the world!⁣ ⁣ ⁣ Ophelia has been able to transition from the pump to oral medicine and we couldn’t be happier. We certainly still have overwhelming moments, but continue to stay strong because we can’t change our diagnosis, so we just embrace it. ⁣ ⁣ ⁣ I watched my mom go through so much growing up. She never once let PH stop her, even when there were times she probably should have. I know for a fact that she is where I get my strength from. She is a huge part of who I am and I am incredibly thankful and proud of that. ⁣ ⁣ ⁣ Today, Ophelia and I are doing well. I hope my story brings strength to you. I’ve witnessed the worst of this disease and I hope I’m here to witness the best- a cure!⁣ ⁣ #30DaysofPH #familialPH

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