My name is Rim Wafaa Bendjaada. I am 22 years old, a rare disease and pulmonary hypertension advocate from Algeria, living with pulmonary veno-occlusive disease (PVOD), a rare and complex form of pulmonary hypertension.
Before my diagnosis, I was an energetic child who loved school and dreamed of the future. Gradually, my life began to change. I experienced extreme fatigue, a racing heart, and shortness of breath. Climbing the stairs to our fifth-floor apartment left me completely breathless. I became pale, lost my appetite, and felt nauseous even after eating small amounts. Most of the time, all I wanted to do was sleep.
Although both my parents are doctors, understanding what was happening to me was not easy. Initial investigations focused on digestive problems, but the results were normal. During an echocardiogram, a doctor noticed an abnormal enlargement of my right ventricle. Further examinations revealed extremely high pulmonary pressure. I was twelve when I was diagnosed with pulmonary hypertension and subsequently with PVOD. For my family, the news was devastating. I was still a child, unable to fully understand what living with such a rare and life-changing disease would mean.
Living with a rare disease in Algeria comes with significant challenges. Awareness remains limited, specialised expertise is not always accessible, and treatment options can be more restricted than those available internationally. Delayed diagnosis can leave patients facing advanced disease before receiving appropriate care. Growing up, I also had to explain my condition repeatedly and deal with misunderstanding. Sometimes, people thought I was exaggerating my symptoms. Those experiences were painful, but they taught me that when a disease is misunderstood, patients need a voice.
My advocacy journey began at fifteen, when I started speaking more openly about my illness. Through the Khadija National Association for Pulmonary Hypertension, I shared my story publicly for the first time. Realising that my experience could help others understand this condition encouraged me to continue raising awareness. I chose not to remain silent, but to speak, educate, and stand alongside other patients.
My personal journey also inspired me to write The Killer Friend, a book exploring the emotional realities of living with a rare illness since childhood. Through fear, uncertainty, pain, hope, and acceptance, I reflect on the complicated relationship between illness and identity. Although the disease has taken so much from me, it has also shaped the person I have become. My book has been translated into English and is available internationally in ebook and paperback formats, allowing my story to reach readers beyond Algeria.
I am also a university graduate in food science and quality control technology. My graduation project developed into a digital-health startup initiative focused on respiratory and rare diseases. Inspired by my own experience, I wanted to create a platform connecting patients and families with reliable information, healthcare professionals, and support. I believe technology can help make the patient journey easier while complementing, never replacing, medical care.
My advocacy has expanded beyond Algeria through connections with pulmonary hypertension organisations in the United Kingdom and the United States, as well as my membership in the Patient Voice Committee of the Rare Diseases Awareness Association in Jordan. I am proud to serve as an ambassador of the Khadija National Association for Pulmonary Hypertension, representing patients and helping amplify their experiences.
Pulmonary hypertension has changed my life and taken away parts of the childhood and youth I once imagined. Yet it has also given me a purpose. I did not choose this disease, but I chose what to do with my experience: to speak, to write, to advocate, and to build. I hope my story, my book, and my digital-health project will contribute to earlier diagnosis, better access to specialised care, and a stronger patient voice worldwide.
Every patient deserves to be heard. Every story deserves a voice. And every person living with a rare disease deserves hope.
My name is Rim Wafaa Bendjaada. I am rare, and I am here.
