Living with a rare disease can be isolating and overwhelming. It can be difficult to find others who truly understand what you’re going through. For a person living with pulmonary arterial hypertension (PAH), connecting with others is essential. Support groups, healthcare teams, and personal relationships with family and friends can be a great source of comfort, guidance, and strength. Building connections that offer emotional support and a sense of belonging can make a significant difference when facing the daily challenges of living with PAH.
Karen, a PAH Initiative Ambassador and longtime support group leader, knows firsthand the incredible impact a strong support network can have on emotional resilience and quality of life. From rebuilding her life after almost experiencing heart failure to establishing a thriving support group, Karen’s story is a testament to the transformative power of connection.
Karen’s Journey to Leadership
Before she was diagnosed with PAH, Karen worked as a hairdresser in her own salon for 15 years. It was a physically demanding job, but Karen enjoyed the daily commotion and drama. When her diagnosis forced her to leave her career behind, Karen found herself grieving the life she had built.
“After I was diagnosed, I was never able to go back to the salon,” Karen said. “It was really devastating. My whole life was turned around.”
Although Karen knew she needed to connect with others who were living with PAH, a year passed before she attended her first support group. She started small by speaking with a mentor on the phone through the Pulmonary Hypertension Association (PHA). When she felt ready, she joined her mentor’s support group and found the sense of community she needed.
Karen’s experience with her mentor was invaluable. Talking with others helped her learn more about PAH and find a place of acceptance. She happily attended meetings for three and a half years, driving an hour each way. When she realized she wanted a more local group, Karen took matters into her own hands.
“Through PHA, I saw that you could train to become a mentor and connect with newly diagnosed patients online or by phone,” Karen said. “I thought, I could do that!”
Karen volunteered as a PHA mentor for about a year before deciding to become a PHA support group leader. After completing her training, Karen worked with her PAH specialist to secure a meeting room at the hospital and share her support group details with other patients. Despite challenges like learning new technology, Karen built a fun and welcoming group. Today, her support group meets once a month for educational sessions, activities like yoga and scavenger hunts, and annual anniversary celebrations.
