A Life Rewritten: KFSHRC Treats Rare Disease After 22 Years of Specialized Care

In an extraordinary testament to continuity in medical care, King Faisal Specialist Hospital & Research Centre (KFSHRC) in Riyadh has been by the side of a single patient for more than two decades, from infancy through to adulthood. This enduring relationship reached a historic milestone with a groundbreaking liver transplant, the first ever performed globally for this particular rare genetic disorder.

A Diagnosis That Changed Everything

The patient’s journey began in her earliest days, when unusual symptoms began to surface just months after birth. Acting swiftly, the medical team at KFSHRC intervened to stabilize her condition. It was soon discovered that she suffered from a congenital deficiency of plasminogen, a protein critical for breaking down blood clots. Without it, the body begins to accumulate fibrous tissue in organs and tissues, which threatens normal function and endangers life.

A Network of Comprehensive, Compassionate Care

Caring for such a complex condition required more than routine medical treatment. It called for a coordinated, multidisciplinary strategy encompassing specialists across various domains. Beyond haematology and transplant medicine, experts in nursing, nutrition, and digital health collaborated to manage her physical well-being and overall quality of life. Every facet of care was tailored to support her as a whole person, not just a medical case.

In a reflection on the early days, the patient’s father said, “My daughter suffered from the moment she was born. She cried constantly and couldn’t nurse. We lived in continuous worry with no clear answers until God opened a door of hope. Today, thanks to God first, and then to the remarkable healthcare capabilities provided by the Government of the Custodian of the Two Holy Mosques and His Royal Highness the Crown Prince, may God preserve them, we witness our daughter’s recovery from this rare disease after two decades of struggle.”

Years of Treatment, Backed by National Support

Over 22 years, the patient depended on regular intravenous infusions of plasminogen and specialized eye drops to preserve her vision, both of which were essential in managing the disease's progression. These treatments came at a steep annual cost, over 6 million Saudi Riyals, all fully funded by the Saudi government. This financial commitment reflects the Kingdom’s larger vision: placing health and human dignity at the heart of national policy, especially for individuals battling complex, lifelong diseases.

A Bold Medical Decision, A Global First

Dr. Hazzaa Al-Zahrani, who leads the Adult Haematology and Stem Cell Transplant Division at KFSHRC, supervised her care throughout the journey. According to Dr. Al-Zahrani, the case demanded not only medical expertise but also strategic patience. After years of monitoring and therapeutic adjustments, the medical team elected to pursue a liver transplant—a bold and unprecedented choice for this condition. The operation was a resounding success, changing the course of her life and setting a new precedent for treatment options in rare blood clotting disorders.

Vision Rooted in Humanity and Science

This remarkable story embodies the values at the core of KFSHRC’s mission. The hospital is more than a center of medical excellence, it is a place where science and compassion work hand in hand. Placing patients at the center of care, KFSHRC continues to redefine what’s possible in medicine, reaffirming its pledge to serve the nation and humanity with integrity, innovation, and empathy.