Columns

Malnutrition’s Impact on My Physical and Mental Health

Pulmonary hypertension is unpredictable in countless ways. I experience noticeable health changes throughout each day, from one hour to the next. Pulmonary hypertension has impacted the way I breathe and the amount of daily exertion for the things I love doing. Recently, it has harmed my weight…

2018: My Year in Review

2018 was triumphant. I accomplished several of my long-term goals. I had zero organ rejection, so I remained on my lowest dose of prednisone all year, and that meant less brain fog, more stable moods, and fewer panic attacks. Though I frequently worried about my…

Focusing on Happiness During the Holidays

When I was younger, the holiday season was all about happiness and excitement. But each year, as I got older, it seemed as if the “magic” of the holiday season started to fade. For those with a chronic illness such as pulmonary hypertension…

An Invisible Illness and the PHight of Our Lives

Wonder Woman has an invisible jet. Harry Potter has an invisibility cloak. I have an invisible illness. The people I sit next to on the metro cannot see it. Members of my family cannot always see it. Every day I work with and walk among healthy…

Pay Attention to the Positive Voices

People say that bad things happen in threes. I think that saying is a bunch of baloney. Lately, it has felt like bad things are flooding my life. Some days I ask myself, “What else can go wrong?” The universe takes that as a challenge:…


A Conversation With Rare Disease Advocates