Rehab Fuad has survived deep poverty, chronic anemia and fatigue since being diagnosed with an inherited blood disorder – and all before reaching her first birthday
But Rehab’s suffering has made her a much stronger person today. Highly resilient and resolutely focused on achieving her dreams, she is determined to live every day with as much purpose and positivity as she can.
Thalassemia is the disease that has caused Rehab to experience an exhaustingly difficult lifetime of weakness, fatigue, accelerated pulse, and other physical and emotional duress. The disease deprives her reduced red blood count of oxygen, and she also suffers from hemochromatosis, or iron overload, that can cause serious organ damage and potentially death.
“As a child, for a long time I could not understand why I was sick. I just knew that my body was not well, and that when I felt tired, my parents would take me to the hospital for examinations and blood transfusions,” Rehab explains. “Now I am 23, I am a daughter and a sister, and I am in my freshman year of university studies majoring in information systems management.”
Persevering through adversity
Monthly blood transfusions are Rehab’s lifeline, but not an entirely secure one. Yemen’s severely crippled economy, soaring inflation, continuous fuel and electrical outages, and low number of functioning health facilities further imperil the lives of thalassemia patients. Only 51 percent of health facilities in Yemen are fully functioning, with the other 49 either partially functioning or not at all, according to 2022 data from the Health Resources and Services Availability Monitoring System.
This essentially means that there are too few health workers, along with never-ending shortages of medicines, supplies and funds needed to ensure affordable - if even available - examinations, blood supplies, or medications on which all thalassemia patients depend to sustain their lives.
But Rehab perseveres with unstoppable courage, and the ceaseless support of her family who left a rural region of conflict-torn Taiz governorate 18 years ago to seek shelter and treatment for Rehab in Yemen’s largest city, Sana’a. It is here where the Yemen Society for Thalassemia and Genetic Blood Disorders (YSTH) has ensured Rehab’s access to quality long-term medical care.
“In 2005, I was registered at the Yemen Society. It was that moment, at age five, that I had the possibility of starting my journey of living a normal life – a healthy one.”
“Not only that, but the Yemen Society has always been with me through my treatments, medications, and examinations. They have also provided me with psychological and mental health support.”
A heroic non-profit leads the fight
In 2005, Rehab was one of only 10 patients who were registered with the YSTH. Today, over 5,000 patients are receiving examinations, medicines and treatments – thanks to this non-profit humanitarian organization that is leading the fight against thalassemia and other genetic blood disorders in Yemen.
“The Yemen Society provides me and other patients with psychological, physical, and financial support. They are basically my second family,” she adds, “I usually go there when I start to feel fatigued – they always cheer me up!”
“The YSTH works to provide patients with continuous examinations, medications, and psychological support – bearing in mind different conditions of patients,” explains Dr. Mukhtar Ismail, Director of the YSTH Thalassemia and Genetic Blood Disorders Therapeutic Centre. He adds, “Rehab has always been an advocate for blood disorders patients, and supportive to other patients – especially to children and younger people. Her positivity has encouraged younger children to overcome the stigma of their health conditions and supported their fight for a normal life.”
With emotion building in her voice, Rehab continues: “The doctors and all staff are very caring and loving. They treat all of us with great respect. They provide exams and blood supplies, and despite all of the hardships they face, they do anything and everything to ensure we get the help we need.”
With support from the World Health Organization (WHO) and the King Salman Humanitarian Aid and Relief Center (KSrelief), the YSTH can now ensure continual laboratory services to all its patients. This support is a main component of a larger KSrelief-funded WHO project to strengthen Yemen’s health system, by providing health facilities and laboratories with essential medicines, supplies, and equipment.
The difference the YSTH has made in her life is incalculable to Rehab. “Unlike people in distant areas who often can’t afford to travel, patients in Sana’a can have regular access to services,” she says. “On top of this, many people do not accept thalassemia patients. They may think that the disease is contagious and harmful to others. They tend to forget that thalassemia patients are humans, above anything else.”
From being bullied to advocating for others
Rehab recalls being bullied as a child because she was weaker and more fatigued than other children. “Many of them refused to even play with me,” she says. “But growing up, I have met many wonderful people who have accepted me with all my flaws.”
“We may tire faster than anyone else, and we might need exams, medication and blood transfusion for the rest of our lives, but this can never affect other people’s health.”
Rehab says her dreams extend to becoming an influential advocate for all persons with genetic blood disorders in Yemen. “I participate in awareness campaigns on television, in schools, universities, health centers, and with the authorities,” she explains.
One of these campaigns is focused on the need for Yemeni women and men to be tested for genetic blood disorders, prior to marriage.
“We all need to support each other and stand tall against all odds. We should never let our health condition hinder our ambition to live and study.” Rehab concludes: “My family always tells me that I am their joy and strength – when I am strong, then they are strong.”
Story: Shatha Al-Eryani & Kevin Cook, WHO-Yemen
Photos: © WHO / Comra Films