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Learn from others like you living with PAH

While your healthcare team should be the main source of information and education, learning and connecting with others living with PAH can provide you with motivation and inspiration. Take a moment to read how some of our SHARE Network* Patient Advocates manage their life with PAH.

*The SHARE Network is made up of volunteers who are dedicated to inspiring others through their personal health journeys and stories of caring. It is managed and staffed by Reverba on behalf of Janssen Global Services, LLC.

Rita’s Story On Staying Motivated

“When I was diagnosed, I asked myself, ‘Am I going to be miserable, or am I going to be optimistic and live my life as best I can?’ I chose to be optimistic, to see the glass as half full. I can’t get rid of my pulmonary arterial hypertension, but I can choose how I live with it day to day.”

– Rita, SHARE Network Patient Advocate

Linda’s Story On Tracking Her Health

“I’ve managed my PAH for 14 years and know having more stats to give your doctor helps them pin down what is going on. Know your own body and be your best advocate. Keep a medical binder and jot down questions to ask your doctor. It gives your doctor a larger picture than just saying ‘I don’t feel well’.”

– Linda, SHARE Network Patient Advocate

Brenda’s Story On Building a Partnership With Her Healthcare Team

“When I meet a new member of my health care team, I share my background and let them know that I want my care to be a partnership between their expertise and my honest willingness to help them. I used to be very independent and was resistant to working with caregivers, but I learned that I gain their expertise and a friendship.”

– Brenda, SHARE Network Patient Advocate

Nicole’s Story On Building Her Support Network

“Initially, being diagnosed with PAH was really scary and isolating for me. I felt alone and like no one understood. However, there are thousands of us out there. Reach out and join a support group. It helps to know you’re not alone. Getting support and giving support go hand in hand. So, I try to be supportive and give back.”

– Nicole, SHARE Network Patient Advocate

Catherine’s Story On Staying Motivated

I remember I have my good days and bad days. It’s important to look back on the bad days and realize that was yesterday and today is a new day. I’m going to move on with my life.

– Catherine, SHARE Network Patient Advocate

Rochelle’s Story On Tracking Her Health

I am a journaler, I write everything down. It’s my life and I need to take responsibility for it. No one else can feel how I feel. That’s why it’s important to track my health.

– Rochelle, SHARE Network Patient Advocate

Lisa’s Story On Building a Partnership With Her Healthcare Team

I have a very close relationship with my pulmonary specialist. He’s the same specialist that diagnosed me 31 years ago. I truly believe it’s all about trust. I have to trust that he’s doing everything he can for me. We stay in contact a lot. I have his phone number and I can call or email him if something happens. If I have questions, I make a list so I don’t forget anything I want to ask.

– Lisa, SHARE Network Patient Advocate

Donna’s Story On Building Her Support Network

I have a lot of people who are very helpful to me, my family and friends. At first, I thought I didn’t need help, when I actually did. I think a lot of people go through that, but I learned to gather the people who care about me and let them help me when they want to.

– Donna, SHARE Network Patient Advocate

What resonates with you from these stories?

Continue to talk with your healthcare team and care partner to reflect on how you manage your PAH. If you are enrolled in the PAH Companion Program, you can also discuss these topics with your dedicated Companion.

Your story can inspire others.

Connect with PAH advocacy organizations to explore educational resources on living with PAH, virtual support groups, and live community events. Ask your healthcare team to recommend local groups. You may also be able to find online, virtual, or phone-based support groups.

Here are a few resources to get you started:

Clicking on any of the links below will take you to an online service, the content for which Janssen Pharmaceuticals, Inc. is not responsible and to which this Privacy Policy does not apply. We encourage you to read the Privacy Policy of every online service you visit.

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Caregiver Action Network

Provides education, peer support, and resources for caregivers.

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American Lung Association

Features educational resources available to help you learn more about PAH.

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Blue Lips Foundation

Funds research and education for early detection and diagnosis of PAH.

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phaware®

Creates PH awareness and global engagement on behalf of families, caregivers and medical professionals.

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myPHteam

Provides an online support forum, with Janssen-sponsored content, for those living with PAH.

Want to find out more about how to get started in the PAH Companion Program?

  1. If you’re receiving a Janssen PAH medication, call 866‍-‍228‍-‍3546 to speak with one of our Care Coordinators.
  2. If you’re receiving a Janssen PAH medication, call 866‑228‑3546 to speak with one of our Care Coordinators.
  3. Tell them you are interested in enrolling in the PAH Companion Program.†

† The PAH Companion Program is only for patients on certain Janssen PH medications, and requires a completed patient authorization form to enroll.