As the moderator of a PHA Facebook group, Janessa Curnow, 38, receives requests to join the group from people all over the world. For World Pulmonary Hypertension Day on May 5, Curnow shares what she’s learned from the international PH community. Curnow leads the PHA Young Adult Support Group and previously led the PHA Grand Rapids Support Group in Michigan.

Testing and the first year after diagnosis are scary and overwhelming. If you are in a country with fewer resources than the US, it’s even scarier. As much as possible, I didn’t want those patients to feel alone.

I love meeting other people with pulmonary hypertension, hearing their stories and walking with them in their journeys.

When I was diagnosed almost 12 years ago, there was no local support group and I hadn’t connected with anyone online. I knew there were others with PH out there, but I was pretty isolated.

From Day One, my clinic had asked me to start an in-person support group in my area as there had been none for years. They knew I had the right personality to be a leader. I’m outgoing, and I caught on quickly. I wanted to know everything I could about PH and how the medications work.

However, I needed to deal with my own feelings and struggles. I had to be in the right place to walk alongside others, and I wasn’t there yet. Because there were no groups for PH near me, I went to another medical support group for a lesser medical issue I had.

International connections

After five years of my own work, I thought it might be time to step up. I decided to volunteer as a PHA support group leader so I could help others not feel as alone as I felt.

Since then, I have connected with patients from around the world. As a PHA Facebook group moderator, I would offer to connect with new members one-on-one and walk with them on their journey.

Testing and the first year after diagnosis are scary and overwhelming. If you are in a country with fewer resources than the US, it’s even scarier. As much as possible, I didn’t want those patients to feel alone.

I connected with people from Australia, India, Brazil, the Philippines and many other countries. Most eventually felt confident enough to move forward on their own, but one patient, Dorotea Trajkovska, has stayed my friend for four years.

Care disparities

Dorotea is from Macedonia, a small country just north of Greece. There is only one PH doctor for the entire country. Almost every patient is put on the same medication, regardless of their specific needs.

Many medications we think of as basic, like Opsumit (macitentan), aren’t available in poorer countries. Few people had access to subcutaneous treatments.

Dorotea, who has dual Macedonian-Serbian citizenship, moved to Belgrade for better care. Serbia is small and poor compared to the US, but has many more options than Macedonia. People in Serbia can get Opsumit and some are already on Winrevair (sotatercept). They have access to a team of PH doctors, not just one.

Patient advocacy

Dorotea also wants to do good for the PH community. She introduced me to her PH friend who lives in Macedonia. Her friend, Ane, had been having issues with her subQ medication for three years with no help. I took up her issue since she had nowhere else to go and doesn’t speak English.

In 2023, I contacted PHA to see if they gave conference scholarships to PHA members from other countries. They said yes, so I worked with Dorotea to apply for a scholarship to PHA 2024 International PH Conference and Scientific Sessions. She received a scholarship, which covered her conference registration, her hotel room in Indianapolis and her round-trip flight from Europe.

Plus, Dorotea and I got to meet, and she took back so much valuable information to her country.

At the conference, I brought her friend’s issue to a panel session where a nurse, doctor and pharmacist were discussing various medications available in the US. I stood up and asked for help.

Before the conference, I learned that countries like Macedonia use much older pumps than we do. Ane’s pump had been discontinued in the US. It was so old that I couldn’t find the user manual online and she had never received a complete user manual.

Finding answers

With the help of some amazing people at Accredo and Johnson & Johnson, I got help for Ane. Accredo helped me understand why the pump was discontinued here: the same reason Ane was having issues. Macedonia doesn’t have places like Accredo that patients can contact for medication help.

I connected with someone from Johnson & Johnson, who was fantastic and got me that user manual. With their help — and a lot of Google Translate — we armed Ane with enough information to push back in her country and get the help she needed.

After three years of pain and a dangerous situation, she is finally out of the woods and can live with PH easier. If I hadn’t been able to connect with so many people in the PH community at PHA 2024, Ane might still be suffering.

For Dorotea, she made a once-in-a-lifetime trip to the US to get some much needed in-person support for her PH journey. We had fun exploring Indianapolis, meeting so many new people, making great connections and getting information at the conference.

Dorotea met PHA Board of Trustees member Charles Burger, who graciously took time to review her medical documents. Dr. Burger gave his opinion on her path forward. Dorotea’s conversations with Dr. Burger helped confirm her decision to move to Serbia for care.

PHA has been such a strong support in the last seven years of having PH. It has given me the opportunity to support countless others in the US and around the world. PHA has helped change our lives for the better, and volunteering for PHA is one of my greatest joys.