I was diagnosed with pulmonary hypertension in 2017 when I was 12 years old. Before that, I lived a normal, active childhood with no unusual symptoms. Then everything began to change.

I started experiencing extreme fatigue, rapid heartbeat and shortness of breath. We lived on the fifth floor, and climbing the stairs would leave me completely out of breath. Soon, I became visibly pale and lost my appetite to the point that even small amounts of food would make me nauseous. All I wanted to do was sleep.

At first, my academic performance suffered. But as my symptoms briefly improved, I was able to recover — until I physically collapsed. My parents, despite being doctors, initially struggled to understand what I was going through.

They began with a series of medical tests, suspecting a digestive issue due to my symptoms, but everything appeared normal. It was only during an echocardiogram that a doctor noticed an abnormal enlargement in the right ventricle. We were referred to a cardiologist, who confirmed my pulmonary pressure was extremely high. I was later diagnosed with pulmonary veno-occlusive disease, a rare form of PH.

Barriers to care

My diagnosis was a shock, especially for my parents. For me, I was still very young and could not fully grasp the reality of what I was facing. What followed was a very difficult journey, made even harder by the fact that this disease is extremely rare and not widely recognized in Algeria. This led to a serious lack of access to treatment.

Of more than 14 medications available worldwide, only two are accessible in my country. Most patients receive the same limited treatment, along with supportive medications that do not directly address the disease.

Even with decent medical infrastructure in Algeria, expertise remains limited. Some healthcare professionals are not familiar with diagnosing or managing PH due to its rarity. As a result, many patients are diagnosed at advanced stages, making treatment significantly more difficult.

Understanding all of this at such a young age was not easy. Explaining my condition over and over and facing different reactions from empathy to indifference was a constant challenge.

Strength through storytelling

Despite everything, I consider myself fortunate. Today, I am studying food science and quality control technology at the University of Ahmed Zabana Relizane and will graduate later this year. I take every opportunity to raise awareness about this disease and advocate for patients like me. I truly believe that our voices will be heard.

One of my proudest achievements is writing and publishing a book where I shed light on the challenges, realities and lessons PH has taught me. The book is titled “The Killer Friend,” reflecting the paradoxical nature of this illness — painful, yet transformative. To my knowledge, my book is one of the first works about PH from a personal perspective.

I can’t deny that PH has changed my life and taken many things away from me. But at the same time, I am grateful because it has shaped the person I am today. I send heartfelt regards to all the PH fighters out there, and I pray that you stay strong and continue to thrive.