By Wasike Elvis
At Moi Teaching and Referral Hospital (MTRH) in Eldoret, the atmosphere was filled with reflection, hope, and resolve as patients, health professionals, and advocates came together to mark World Hemophilia Day. The global day, observed annually on April 17, shines a spotlight on hemophilia and other inherited bleeding disorders—conditions that often remain hidden, misunderstood, and underdiagnosed in many parts of the world.
This year’s celebration in Eldoret was not only a moment to raise awareness but also a powerful platform for health professionals and patients alike to call for government intervention, increased access to treatment, and nationwide screening programs.
Understanding Hemophilia: A Silent Struggle
Dr. Samuel Isajia, a clinician at MTRH, described hemophilia as a rare, inherited bleeding disorder where the blood doesn’t clot properly due to a lack of specific clotting factors. This deficiency leads to prolonged bleeding, even after minor injuries, and can result in serious joint damage, internal bleeding, or even death if not managed properly.
“Imagine your child undergoing circumcision and the bleeding doesn’t stop. Or giving birth, and the umbilical cord continues bleeding abnormally long. Or going to the dentist for a simple tooth extraction, and it becomes a medical emergency,” Dr. Isajia said. “That’s the daily reality of someone living with hemophilia.”
In Kenya, hemophilia is still widely underdiagnosed and misunderstood. According to the MTRH registry, the hospital has 940 patients currently living with the condition. But experts estimate that, with Kenya’s population surpassing 50 million, and considering the global prevalence rate of 1 in 5,000 males, the real number could be more than 5,000 individuals nationwide—many of whom remain undiagnosed.
“Sadly, most families discover it too late, often after years of suffering and misdiagnosis,” said Dr. Isajia. “We urge families to come forward for screening, especially if they notice signs such as prolonged bleeding, unexplained bruises, or joint swelling in children.”
Family Screening and Education
At MTRH, clinicians take a comprehensive family approach to identifying and managing the disorder. Once a patient is diagnosed, the hospital initiates a family tree mapping, focusing on the maternal side, where the defective gene is typically carried. Relatives are then screened and either enrolled into treatment programs or educated on how to manage the condition and prevent complications.
“We’re not just treating patients—we’re building awareness within families,” Dr. Isajia added. “Education is as critical as medication.”
A Costly Disease: Calls for Government Support
Dr. Sam Mbunya, an advocacy relations consultant for hemophilia, did not mince words about the burden the disease places on patients—and on a health system that still relies heavily on donations for life-saving medication.
“One vial of clotting factor—what a single treatment requires—costs KSh 70,000. And a single infusion may need up to three vials. That’s over KSh 200,000 per visit for someone with moderate to severe hemophilia,” he explained. “Now imagine a poor family trying to manage that every time their child falls or bleeds.”
Dr. Mbunya emphasized that hemophilia is not a death sentence, nor a curse, and urged the government to support the passage of a bill in Parliament that would allocate funds for regular, subsidized access to treatment.
“We need this bill. We need a policy framework that ensures no child dies or becomes disabled because of a condition we know how to treat,” he said.
The Human Face of Hemophilia
For Geoffrey Mosongo, 46, the struggle with hemophilia has been lifelong. Diagnosed at the age of three, Geoffrey recalls the early years when blood transfusion was the only available option—and a dangerous one at that.
“Back then, doctors didn’t know much about hemophilia. I’d fall and swell up. They thought it was witchcraft,” Geoffrey said. “Now, we’re lucky to receive donated clotting factor, and I can walk, move, and live without pain. But this medicine is expensive. We need help. We are poor. We cannot afford it.”
Despite his condition, Geoffrey is married with two children, and his voice carries both gratitude and urgency. “Hemophilia can be managed. I’m living proof. But only if we get the medicine. We’re not asking for luxury—just the chance to live.”
Lucy Macharia, the mother of a child living with hemophilia, echoed similar sentiments, but added a layer of social stigma to the challenges.
“Where I’m married, they don’t accept me because of my son. They believe it’s a curse. They say I brought it into the family. They want nothing to do with me,” Lucy said, holding back tears. “But it’s not a curse. It’s just a condition. A medical one. With awareness, many marriages can be saved. Families can stay together.”
Nursing Hope: Reaching the Unreachable
On the frontlines of hemophilia care is Nancy Midiwo, a nurse at the Hemophilia Clinic at MTRH. She sees, firsthand, the logistical hurdles patients face.
“We see about five patients a week at the clinic, but many suffer at home because they cannot afford the transport to come here,” she said. “That’s why we have started a community outreach program—we send medication to nearby health centers, where patients can access treatment.”
Nancy is a vocal advocate for early diagnosis. “When someone bleeds too long or develops swollen joints after a fall, they need to be screened. Early diagnosis saves joints, prevents disabilities, and gives people a real shot at living a normal life.”
An International Perspective and a Shared Future
Visiting hemophilia specialist Dr. Anne Grayest, who has worked in India and the United States, emphasized that treatment and awareness can transform lives, and that Kenya has what it takes to make a change.
“We’re here doing joint awareness campaigns. No one should be stigmatized. No one should suffer in silence,” she said. “When diagnosed early and treated properly, hemophilia patients can live full, active lives. This is not a death sentence.”
Looking Forward: From Awareness to Action
As the commemorations wrapped up, the voices from Moi Teaching and Referral Hospital grew louder, more unified. They carried a shared message: Hemophilia is not rare. It is just rarely diagnosed. It is not a curse. It is a condition that can be managed—with care, community, and commitment.
Healthcare providers are urging the Ministry of Health to recognize hemophilia as a national health priority. Patients are asking for dignity, access, and inclusion. And families, once burdened in silence, are now speaking out.
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