Find a PAH Specialist

[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 www.PAHInitiative.com]

I was just informed I have PAH; do I need to see a PAH specialist?

You have just been diagnosed with PAH.

One, you already have at least a portion of a care team or a physician or provider who is being thoughtful about the potential of pulmonary hypertension being present. And that I think goes a long way for me because it is a rare disease, and so, somebody was listening to what you were telling them and doing the testing necessary to be able to give you that diagnosis.

I think it is important to always feel that you can talk to that provider. I welcome the questions within my clinic and to me about what my area of expertise is, about my comfort level with all of the different types of therapies and treatment options, and so asking your provider if this would be an opportune time to find someone more specialized who may treat with all of the different therapies and be sort of up on all of the most pertinent research.

So I think, ask your provider because we are here to help and support you, and if you don’t feel that they may have all of the responses, we may not have all the answers, but we should have insights into what our patients need and deserve.