One of the things I find remarkable here in Kenya are the questions patients ask me: Why does my knee hurt? Why do only boys get hemophilia? If I get a shot now, I will be well for six months, right? If my first child has hemophilia, then no other child I have will get it, is that correct?
Maureen Miruka, mother of a child with hemophilia, is determined to provide that education. She is at once shocked by the low level of understanding, and motivated to enlighten. One way to do this is by large family meetings. Another is by personal visits to the homes of families with bleeding disorders. Today we did both.
First, we shouldered past buses, cars and trucks on the congested Nairobi streets to visit Florence Odwar, a mother of five–two with von Willebrand Disease. Some parts of Nairobi are dangerous, and we cruised past slums, where I could not take a photo, because to lower your window might invite a quick snatch of your camera. Florence’s street is in a rambling but safe area. She welcomed our visit.
Her house is urban and small. A room that can only fit a couch and a chair, partitioned by a hung curtain, behind which I assumed was the bedroom, where she, her husband David, and children Moline, James, Nickson, Jovan and Georgina sleep. Seems impossible but they work it out.
David, Moline and Jovan have VWD. Rarely is there treatment. Jovan was diagnosed when his teeth were coming in and bled profusely. Afterwards, the entire family was examined. Florence was shocked. Even more than the physical suffering the three experience, there is financial. VWD infiltrates every aspect of their life.
Despite their obvious poverty, they are a hard working family. David is an electrician for a company; Florence is a seamstress, owning her own small shop for 10 years now. They earn about $200 a month. From that they pay rent ($62), school fees ($37), clinic visits ($13); they all take public transport and food costs are high. With each bleed, one parent must take time off from work, which forfeits their pay. Life is a struggle.
I was struck by Florence’s inquisitive nature, willingness to learn more about VWD, and determined to have a better life for her children. The children are ages 21, 20, 19, 9 and 5. All are doing well in school. James and Nickson want to be engineers; Jovan wants to be a pilot. If that fails, I think he wants to be Chuck Norris. I have never in my life been asked so many questions about Chuck Norris, whom Jovan things is real. We had a lengthy discussion about who would win in superhero fights (Mr. Fantastic could beat Chuck Norris, and Bruce Lee would beat Jet Li. Nobody could ever beat Superman)
The home visit was a great opportunity to evaluate Florence’s family for Save One Life and I am happy to say they are our first Kenyan family to enroll! It was also a great time to educate. We discussed many aspects of VWD and treatment, especially for Jovan’s terrible nose bleeds, and Florence asked for my book.
After a photo session which grew to include all the neighborhood children, we traveled on to a family gathering: about 13 families attended the first Family Day for the Jose Memorial Hemophilia Society-Kenya. I find most Kenyans to be soft spoken, polite and deferential. It was hard for them to break the ice, even with one another. The JMHS-K provided delicious food and promoted an atmosphere of community and trust. By the end, everyone was sharing their stories. Another Family Day was promised, with activities and education sessions.
Afterwards, the board members and I sat around, laughing and sharing our own stories about everything. There’s a real bond between parents whose children share the same chronic disorder. Maureen realized I had only been in Kenya for two days. “It seems like a week!” and I agreed. The bonds we made in two days will be unshakable and unbreakable eternally, or as long as hemophilia stalks the earth.