I am Ben Maoga Mosongo,34 years old, a Kenyan who has moderate Hemophilia A. Professionally am an electronic mechanical. I was elected to serve as the executive board member of the Kenya Hemophilia Association (KHA) where I represented patients with needs.
To me, Hemophilia is life-threatening with all I have experienced. I have gone through a lot living with hemophilia, and sometimes am in denial. Today I have a pseudotumor that has really affected my capacity to execute many functions. Am not sleeping like other normal people due to the location, size, and pain from the pseudotumor. Most of the time I sit till morning and my life is full of distress, can’t walk or stand for a long time.
In old times, we were in darkness because accessing health facilities with the capacity to offer hemophilia treatment was a nightmare. We used to travel long distances for medication and by then the only treatment available was fresh frozen plasma and cryoprecipitate. Sometimes our parents paying attention to our health needs was inadequate due to other competing demands resulting in deformities. The most challenging thing is sometimes you feel rejected by friends, only a few stick around, and those who have gone through the same journey. My kids always ask me when will I walk like them. What really happened daddy? and many endless questions.
Nevertheless, I really thank God because there’s a relief that there is access to factors and other treatment products that we use to manage bleeds and relieve our pains. This has been possible through goodwill from well-wishers like the World Federation of Hemophilia (WFH) who donate factor products to Kenya. Currently am using crutches as the pseudotumor on my left side has really brought so much stress on my movements but with the continued prophylaxis with factor VIII, I hope it shrinks to an operable size.
God is so great because my family is always encouraging me. I also thank God for my physician and nurses for being there with me all through and helping me cope. Am hopeful I will get well soon. My wish is for the government of Kenya to recognize the needs of people living with Hemophilia and enhance access to treatment.