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The Therapeutic Benefits of Owning a Pet

My son was 8 years old when he was diagnosed with pulmonary hypertension (PH). Children are supposed to be nurtured, but the attention showered on a child living with a life-threatening disease can begin to feel smothering. For the five years my son battled PH, I greeted him each…

I’m Struggling with the Misconceptions of PH

Pulmonary hypertension (PH) is a complicated disease. I am the first to admit that. I live in the mountains and the valleys of PH life daily, and often I am thrown curveballs. While it is understandable that others around me cannot comprehend the impact PH has on my body, dealing…

Loving My Scars Involves Recalling Past Trauma

I can’t recall a time in my life when I didn’t have scars to show. Growing up with congenital heart disease left me with scars from drainage tubes and open-heart surgery, and cutdown scars from catheters and IV placements. I was always told to “love my scars”…

Planning Happy Moments Amid the PH Storms

Surviving day in and day out with a life-threatening illness like pulmonary hypertension (PH), well, simply sucks. My struggles with numerous symptoms and medication side effects weigh me down and rapidly deplete me. Uptravi (selexipag) and Revatio (sildenafil) can cause horrific side effects, and these are my two primary…

How to Advocate for Your PH Child’s Education

Pulmonary hypertension (PH) has a ripple effect on family life. A diagnosis is like a pebble tossed into water, its weight disrupting the calm with waves of change. My advice is to wade through those ripples and rescue some normalcy. It might take time to calm the waters, but…

How I Project My Physical and Mental Struggles

Last Sunday, I thudded up the stairs to my apartment, making as much noise as possible, unlocked the door forcefully, and slammed it behind me. As soon as I entered, I rummaged through my cupboard, frantically looking for a medicine cup. I raised my voice at my boyfriend,…

Cooking Is Great in Life with PH

A therapist once asked me what makes me happy, and I said “food” right away. Thankfully, I’ve matured since high school, and food is no longer at the top of my mental list of reasons to live. Now coffee ranks above it. I’m joking!…

Looking Back at My PH Journey and Finding Hope in the Hard Places

My schedule was hectic this week. I had several days of bloodwork and doctors’ appointments scheduled. The heat here in Texas with its suffocating humidity is not ideal weather for someone with pulmonary hypertension (PH). My energy levels were quickly depleted, and I became mentally and physically drained. When…


A Conversation With Rare Disease Advocates