I lost jobs and love due to a bleeding disorder My journey of resilience and hope

Moline Maragai addresses participants at Kenyatta National Hospital in Nairobi during the Hemophilia walk to mark World Hemophilia Day, on April 16, 2025. [ Jenipher Wachie, Standard] Imagine being born and growing up with a bleeding disorder that most people know nothing about- one often misunderstood and wrongly attributed to witchcraft or curses. Spending your entire life struggling to manage the condition-from primary school to university- missing months of classes because your health wouldn't allow you to attend regularly. And when you finally secure job opportunities, you lose them within a short time because your employers mistake your frequent absences for laziness. During your menstrual cycle, you are forced to use a tampon and adult diapers just to feel somewhat comfortable around others. Worse still, your period lasts more than 14 days, the bleeding so heavy that it requires blood transfusions just to recover what you have lost. As your peers animatedly share heart felt stories about marrying their ideal partners, you remain silent unable to relate. Every time you met someone you believed could be your better half, the relationship ended as soon as they learned about your condition. This was the reality for 40-year-old Molline Atieno. Growing up with a bleeding disorder shaped every part of her life. Today, she is a mother of two and a survivor of Von Willebrand Disease (VWD). VWD is a common inherited bleeding disorder where the blood does not clot properly. It occurs due to low levels or malfunctioning of VWF-a protein essential for blood clotting. As a result, individuals with VWD experience prolonged and often excessive bleeding, even from minor injuries. Growing up in Nairobi, Atieno spent part of her childhood in the Mathare slums before her family moved to Eastleigh, where she lives. She recalls suffering frequent nosebleeds-some so severe they led to hospital admissions. But what truly caught her was her younger brother began experiencing the same symptoms. "Life in Eastleigh was better compared to Mathare," Atieno said. But things changed when neighbours who knew about our condition started pointing fingers at our family. some claimed we were bewitched, others said our parents had done something evil to get us." "Being the first born in a family of five, I heard those rumors countless times-but no one ever mentioned a bleeding disorder. Maybe they simply didn't know about it," says Atieno, her eyes welling with tears. At first, she thought the nose bleeds were normal - just part of life-until one episode nearly took her life. "It all began with my brother having heavy nosebleeds. One day, it got so bad he lost consciousness and was hospitalised. Coincidentally, I also started bleeding heavily and ended up admitted to the same hospital. We both had to undergo blood transfusions," she recalls. For Atieno, what stands out most from her childhood is the constant back and forth to hospitals with her brother, without any clear understanding of what was causing their symptoms. It wasn't until 2008 that she finally received a diagnosis: she was suffering from a bleeding disorder known as Von Willebrand disease. "At Kenyatta National Hospital, doctors decided to run tests on our family because of our medical history. The previous year, my father had a tooth extracted at the same hospital and bled excessively afterward," Atieno recalled. When they conducted tests, it was revealed that my dad was a carrier of Haemophilia-a condition my brother and I had inherited." While her brother mainly struggled with severe nosebleeds, Atieno's condition worsened once she reached puberty.Her condition was a major hindrance throughout her life-from primary school, through university and even now in marriage. Atieno says she lost several job opportunities because employers who didn't understand her condition assumed she was avoiding her responsibilities, unable to meet the demands of consistent attendance. Even getting married was a challenge. Atieno had many suitors, but once she opened up about her condition, they disappeared-one after the other. That was until she met a man who truly understood and accepted her. They got married when she was 30-years-old. "Of course, I was afraid of getting pregnant-not knowing how things would turn out, especially since I was aware of my condition," she shares. "But in 2017, I decided to give it a try. The pregnancy came with many challenges. I continued bleeding and had to visit the hospital regularly for both my safety and the baby's. Sadly, I couldn't carry the pregnancy to term and delivered two months early-but my baby survived," she adds, her face lighting up with a smile. It took another eight years before she could face another pregnancy. The fear, anxiety, and complications from her first experience held her back. Yet, pressure from family was intense. Some mocked her, saying she was nearing menopause with only one child, and even suggested that her husband marry another woman who could bear him more children. Atieno is now calling for stronger advocacy efforts-both for healthcare providers and the general public-to raise awareness about bleeding disorders. She emphasised the relevance of this year's World Haemophilia Day theme, "Access for All: Women and Girls Bleed Too", saying it sheds light on a long-standing misconception. "For many years, these conditions were thought to affect only males, leaving women to suffer in silence." Another young and innocent voice joins this call for awareness-Christopher Koisikir. He had no choice when the day of circumcision came. Now in his mid-20s, Koisikir vividly recalls the terrifying moment from his childhood, when no one understood what was happening to him. It wasn't until 2014, at the age of 16, that he was finally diagnosed with a bleeding disorder. Koisikir exhibited clear symptoms of a bleeding disorder from a young age-frequent nosebleeds, and painful swelling in his knees and limbs-but he was not tested or diagnosed until adulthood. The misunderstanding extended beyond school. At home in Kajiado, the reaction was the same. Whenever he bled, he was taken to various hospitals, including Kijabe and Nairobi Hospital. But the doctors treated him for the wrong conditions-never for haemophilia. According to Dr Gichimu Joshua, haemophilia is an inherited bleeding disorder in which the blood does not clot properly due to a lack of clotting factors. This condition can lead to spontaneous bleeding and excessive bruising, especially after surgery or injury. "There are two main types of haemophilia-Haemophilia A and Haemophilia B," explains Dr Gichimu. "Haemophilia A is caused by a deficiency in clotting factor VIII, while Haemophilia B results from a deficiency in factor IX." He notes that the most noticeable sign of haemophilia is prolonged bleeding from wounds. However, not all patients bleed externally. Some experience internal bleeding, which affects specific parts of the body-most commonly the joints. "When bleeding occurs in the joints, it often causes swelling and intense pain, making walking or movement difficult," he adds. "Other signs of haemophilia include bleeding in the muscles and digestive system," Dr Gichimu continues. He also highlights the high cost of factor concentrates, which are essential for treating haemophilia. "One vial of concentrate costs around 50,000 Kenyan shillings. This is why we rely heavily on donations to make treatment possible for the 1,000 patients at our facility." He emphasizes that for years, haemophilia has been seen primarily as a male condition, leaving out females who are also affected.

I lost jobs and love due to a bleeding disorder My journey of resilience and hope

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