November is Pulmonary Hypertension (PH) Awareness Month. In honor of PH Awareness Month, I will be sharing patient profiles about special members from the PH community. Please be sure to visit throughout the month of November to read more PH profiles. Miriam Katherine is a…
In Life With PH – a Column by Serena Lawrence
November is Pulmonary Hypertension (PH) Awareness Month. In honor of PH Awareness Month, I will be sharing patient profiles about special members from the PH community. Please be sure to visit throughout the month of November to read more PH profiles. Carolyn…
The cost to treat pulmonary arterial hypertension (PAH) is often exceedingly high, costing more than $200,000 annually. Rare disease markets are much smaller than the typical drug market, meaning the cost of treatments for rare diseases, such as PAH, are priced higher than treatments…
It can be challenging to find an exercise routine when living with pulmonary hypertension (PH). This is partly because each individual with PH is unique, and the disease impacts everyone differently. Some individuals living with PH may still be able to be quite active, while others…
My obsession with hope began when it was taken away from me nearly four years ago. I was alone in a doctor’s office, watching snow fall through the window. My parents had been taken out of the room to talk privately with my doctor, which I…
I wasn’t feeling well two weeks ago after completely overdoing it in a heat wave and convincing myself that paddle boating was a good idea. (Spoiler alert: It wasn’t.) Feeling the need to take care of myself, I decided to accept defeat, cancel my plans for…
Editor’s note: Charity Tillemann-Dick, soprano, former PHA spokeswoman, and two-time double-lung transplant recipient, reflects on her upcoming book, the writing process, and looking forward. This Q&A is a continuation of her interview ahead of the release of her book, “The Encore: A Memoir…
Charity Tillemann-Dick is a soprano and the recipient of two double lung transplants. Told she might never sing again, Charity instead became a top-selling classical recording artist who has performed across the United States, Europe and Asia. She also served as…
Last week, I had a follow-up with my pulmonary hypertension specialist. I find it hard to mentally prepare for these appointments. In the days and weeks leading up to my appointment, I start to panic, worrying about whether I seem more short of breath or if…
Pulmonary hypertension might be an invisible illness, but it isn’t invisible to me. I notice pulmonary hypertension first thing when I wake up in the morning. I roll over, often feeling like a fish tangled in wire, and gingerly try to avoiding stepping on my oxygen…
It became difficult to envision many milestones in my life after I was diagnosed with pulmonary hypertension (PH). Getting married, having a career, moving out, and having children all felt just out of my reach. Truthfully, I can still feel those things at the tips of my…
Editor’s note: This column is in continuation of last week’s column entitled, “Oxygen in Real Life, Part 1: Young Adults Use Oxygen, Too.” I’ve discovered that news and entertainment organizations either fail to write about rare diseases like pulmonary hypertension or portray them inaccurately. When…
