Pulmonary arterial hypertension (PAH) is a rare condition with only 500-1000 new cases being diagnosed each year in the U.S. Symptoms of PAH may include shortness of breath (dyspnea) especially during exercise, chest pain and fainting episodes.

For the past few weeks, we have been asking our members living with PAH to share their experiences living with this rare condition. Here we will share some of the insights from our community.

Of the almost 2,000 people who have interacted with our survey, about 61% share that PAH has had a major or severe impact on their lives. It has created difficulty with finances, extreme fatigue or decreased tolerance for activity, fear of missing out, increased anxiety and depression, loss of appetite and more, for those who live with PAH.

Some of our community members shared more in depth of how it’s affected their lifestyle:

“I’ve been sitting on the sidelines for the last couple of years. My mind wants to do things like I used to but my body tells me no way.” – Anonymous

“I cannot pursue a career like I hoped to. I rarely have energy to go out and do normal things like shopping or going to events. I feel like I hold my family back from making memories and going on adventures because I’m always fatigued.” – Anonymous

“I was always very active and independent before my diagnosis. I have two young daughters who I want to spend as much time with as possible. I want to be able to work full-time and spend my afternoons and evenings enjoying all of their activities. And times I get extremely fatigued and have side effects from medication and disease progression. This often affects my ability to participate in their lives fully.” – Anonymous

“The most severe impact has to be the realization that I was mourning the loss of my life, as I’d known it. In every aspect. It took strength and determination to get through it, although I find that in some ways the mourning continues. It will likely be omnipresent, in one form or another.” – Anonymous

I am a social butterfly. I love meeting people. I love to go to places when it’s time for sports. I love love concerts. PAH has taking that away. My o2 doesn’t last long enough for me to even go. I can feel fine when I’m invited to go and do things then when it’s time I don’t feel well and have to cancel. My friends don’t get it since the disease is invisible. My family finally gets how sick I truly am. It’s taken so much from me.. – Anonymous

For a disease that takes away so much from most individuals that live with it, there is still no exact known cause for it. About 32% of people’s PAH is idiopathic, meaning that it has been determined that the disease has no identifiable cause. More than 35% of the individuals who took our survey share that they don’t know where their PAH came from, and it has yet to be determined as idiopathic.

Even more than that wish they were equipped with better information and resources than what was provided to them.

Some of our community members have become avid advocates and continuously urge the medical community to research it more.

It’s important to raise awareness of this disease through sharing experiences, information, statistics and resources. Jolie, a Health Stories Project member, leads by example and shares her experiences living with PAH here.