Jenna O. was no stranger to rare diseases. Her father’s side of the family has a long history of hereditary hemorrhagic telangiectasia (HHT), a genetic condition that causes fragile, malformed blood vessels and makes people more prone to bleeding. As a teenager, Jenna tested positive for this disease, and soon after, was also diagnosed with Crohn’s disease, a chronic inflammatory bowel disease. So, when she started having challenges breathing and began passing out in law school when simply climbing a flight of stairs, she knew to take these new symptoms seriously.
Pushing for a Diagnosis
At her first appointment with a healthcare provider, Jenna’s symptoms were brushed off as anxiety. “I had been going to doctor appointments for years for my other health issues and knew that my busy work schedule wasn’t causing my symptoms, something else was going on.” She pushed for answers and went to see a cardiologist for a second opinion. She found herself advocating once again, this time for insurance to approve a critical test her cardiologist ordered. Eventually, the test was performed, and Jenna remembers the day that she finally got the results, “I love traveling and was just going to board a plane for a 14-hour international flight when my doctor called urging me not to go.” Her results indicated she had pulmonary arterial hypertension (PAH).
From the onset of her symptoms to the phone call that stopped her trip, Jenna’s diagnostic journey had stretched over several years, a long, exhausting path that many people with rare diseases know all too well.
Specialized Care Matters
An important part of managing pulmonary arterial hypertension is working with a specialist who understands this rare and complex disease. Providers experienced in PAH can tailor a treatment plan to your specific needs, closely monitor your symptoms and adjust your treatment as needed.
For Jenna, this process was complicated by her other health condition, hereditary hemorrhagic telangiectasia, as many of the medications used to treat PAH carry a higher risk of bleeding. This meant she needed a specialist who understood both conditions and could carefully balance the treatment approaches for each.
Jenna now works closely with her specialist to follow the treatment plan that best supports her health and her lifestyle. “Travel is very important to me,” she explains. “I told my specialist from the beginning that I wanted to keep traveling while managing my disease.”
This commitment has required good communication with her care team, ongoing self-advocacy and close collaboration with her provider to ensure her treatment plan aligns with her travel goals. It also meant learning how to navigate travel with medical equipment; information she discovered was not always easy to find. What began as Jenna filling a knowledge gap for her own traveling exploits soon evolved into a mission to help others traveling with medical equipment to be able to travel with confidence.
Traveling Without Boundaries
Jenna continues to face challenges head on as she adjusts to life with PAH, which includes traveling with a continuous infusion pump that delivers the medication she needs. She also navigates what she describes as having an invisible disease. “Since I don’t use a wheelchair or mobility device, I am often met with criticism or disbelief for needing to board a plane early or get assistance from my traveling companions,” Jenna explains.
“People don’t always understand that I don’t have the endurance to walk long distances or that I need help lifting luggage into the overhead compartment because of a lifting restriction.”
Drawing on her own experiences, along with extensive research, Jenna launched a blog to educate and advocate for others living with PAH and chronic illness. While she shares practical information about traveling with medical equipment, she also discusses working while managing PAH and balancing chronic illness with everyday life. “I wanted to share real-life experiences for people like me that were missing from existing resources.”
Moving Forward With PAH
Jenna’s story is a powerful reminder that while PAH brings challenges, knowledge and self-advocacy can make a meaningful difference in your health journey. Understanding your disease, working with a specialist and not losing sight of your personal goals are key steps to continuing to live a full life with PAH.
Educational content created with support from Merck
Blog last updated: April 6, 2026
