Columns

Celebrate Helen Keller Day With Optimism

On this day in 1880, a healthy baby girl named Helen Keller was born. When Helen was 19 months old, a febrile illness with no known cause struck her. Historical biographies speculate she had rubella, scarlet fever, encephalitis, or meningitis. Whatever the illness, it left Helen blind and deaf, and…

My Sons Share Their Father’s Day Reflections

Experience has taught my husband, Brian, and me that life is what you make it, but you don’t always get to choose the ingredients. We have put a lot of love and other wonderful things into raising our sons Cullen, 22, and Aidan, 21. Pulmonary hypertension (PH) wasn’t…

My College Experience Was Great — and Yours Can Be, Too

When I was deciding which college to attend, my health was declining because of pulmonary hypertension (PH). That made my college decision — which for most people is marked by excitement and opportunity — clouded by my needs for accessibility and support. A few weeks before making…

Finding a Way to Address Mental Health Setbacks

Lately, I’ve realized I’m in a funk and don’t know how long I’ve been going through this season of my life. I feel overwhelmed. But is it connected to my cross-country move last year? Or perhaps I continue to struggle after recovering from COVID-19.  I…

I’ve Made a Mental Note to Take Care of My Mental Health

As a co-moderator for the Pulmonary Hypertension News Forums, I’ve encouraged and taken part in many hot topics over the past three years. During that time, I’ve noticed one topic resurfaces often, and it always triggers great responses. Mental health and wellness spur a conversation that pulmonary…

Inviting People In After Coming Out

I’ve come out a few times in my life. I came out regarding my sexuality as a member of the LGBTQ community. I’ve also come out as a disabled and chronically ill individual and a member of the pulmonary hypertension (PH) community. Coming out is a deeply personal experience.

Searching for a New Care Team Proves Challenging

As I searched for a new primary care physician (PCP) in March, I learned that finding my new healthcare team after relocating across the country would prove challenging. The first potential candidate spent three hours going over my medical background with me, only to inform me that my health…

The Day-to-Day Symptoms I Experienced While Living With PH

Pulmonary hypertension (PH) patients use several analogies to describe what it feels like to live with the illness each day. One example is that it’s akin to breathing the air at the top of Mount Everest. Another is that the exhaustion makes us feel like we’re constantly running a marathon.

Why I Value Emotionally Intelligent Doctors as a PH Patient

After four years of living with pulmonary hypertension (PH), I’ve learned that there are good doctors, bad doctors, and doctors who fall somewhere in between. I’m lucky to have had mostly positive experiences, but the reality is that doctors who specialize in treating physical illnesses may not always be…


A Conversation With Rare Disease Advocates