Working With a PAH Expert

PAH patient video: Working with a PAH expert

PAH patients and PAH Initiative Ambassadors Karen, Joanne, Laura, and Denise discuss the benefits of having a PAH expert as part of their care teams.

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[On Screen Text: Working with a PAH Expert. PAH Initiative - Sponsored by United Therapeutics - Committed to Improving the Lives of Patients.]

[On Screen Text: Karen PAH Initiative Ambassador]

It was a shock to have this diagnosis.

[On Screen Text: Joanne PAH Initiative Ambassador]

I learned very quickly after my diagnosis, that it was very, very important to see someone who specializes in pulmonary arterial hypertension.

[On Screen Text: Laura PAH Initiative Ambassador]

It's all confusing at first, it's scary and confusing.

I have seen in my support group, folks who want to stick to a doctor, maybe a local doctor that they know.

[On Screen Text: Denise PAH Initiative Ambassador]

This disease is so rare that every doctor may not know about it.

Even though you're comfortable with that doctor, it's important to find someone who specializes in this field because that person is going to have all of the knowledge that you are going to need.

I really think that you need to see a PAH specialist because a PAH specialist is going to have a lot more dedicated knowledge to the PAH world.

I would encourage others to go ahead and do their homework on this disease.

I walk in every appointment, I have my notes, I have my questions already written down.

I'm fighting for my life, and so when I'm in the doctor's office, I have to be selfish.

I fully take the lead and I will tell the doctor how I'm doing or what I've been doing.

Some doctors are great with helping you connect with support groups or helping you connect with someone who does have PAH.

If I have a question, I can call the main nurse of the department and they'll call me back within a day.

We have an app through the hospital. We communicate through email a lot, and we also have Facebook friends with my nurse. So, we are able to communicate in a lot of different ways nowadays.

And I have been incredibly fortunate to be under their care.

[On Screen Text: PAH Initiative - Sponsored by United Therapeutics - Committed to Improving the Lives of Patients. For more resources about PAH, please visit]

Learn more about PAH

PAH is a complicated disease that can be difficult to understand. We’ve broken it down for you with easy-to-understand information, simple graphics, and informative videos from a PAH specialist.

What Is PAH?

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Thumbnail for PAH Initiative Ambassador’s article about how they stay connected with their communities after being diagnosed with PAH