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Celebrating today’s victories to honor my younger self

When I was diagnosed with pulmonary hypertension (PH) in 1999, doctors prepared my parents for the reality I was facing. Just two weeks before my fourth birthday, they were told such words as “progressive” and “terminal.” The doctors set the trajectory of my PH journey before us,…

Fun but simple date-night ideas for those of us with PH

Are you or your partner managing pulmonary hypertension (PH)? Does it make going out on traditional dates difficult? If so, don’t worry; I’ve got you covered. Date nights are essential to any relationship, but they can be challenging with PH and limited energy. That doesn’t mean we have…

3 ways I prepared as a PH patient for heart-lung transplant

When I was diagnosed with pulmonary hypertension (PH) in 1999, the subject of organ transplant was introduced almost immediately. Doctors explained to my parents that PH was terminal, and that transplant, usually of the heart and lungs, was an option for extending life. For the next 14 years, transplant…

Managing anxiety and other mental health concerns with PH

Most people focus on the physical challenges of living with a rare disease like pulmonary hypertension (PH). However, conversations about mental and emotional health don’t get enough airtime, in my opinion. If you’re reading this and thinking that mental health issues like anxiety and depression aren’t…


A Conversation With Rare Disease Advocates