Ghana Hemophilia Society

“A little becomes a lot”

This will probably be my last entry before I head off for Boston tomorrow evening. I am in Ghana, a country of 25 million on the east coast of Africa, where it is blistering hot and crackling dry. Ghana enjoys a higher level of income than much of Africa, and it really shows in the good roads, efficient services, and many high-end cars zipping about. But hemophilia care? Still at a poverty level.

(with the Minister of Health)

First, let me wrap up the previous two county visits: a week ago I attended the charity fundraiser by the Jose Memorial Haemophilia Society-Kenya. It was amazing! The Minister of Health, Beth Mugo, attended and sat with us at the head table. Lovely lady; her husband Nick, former ambassador to France, attended the same small college in Ashville, North Carolina that my daughter Tara will attend in August! I was shocked as I had never even heard of Warren Wilson College until Tara applied there. He was their first African student, so we bonded immediately. Strange coincidence! The Minister applauded the JMHS-K’s work and gave a check for $800 to the society, which is a lot of money in Kenya. There was excellent food, great speeches, a real commitment to change hemophilia, and lots of dancing. To one of my faithful readers, John, yes, we even danced disco!

(with Maureen Miruka, president of Jose Memorial Hemophilia Society-Kenya)

The event raised $10,000 US. This is respectable even by US standards. By Kenya standards, out of this world. Congratulations to Maureen, Sitawa, Dolphine, Salome, Chege, Julie and Andrew, Sylvia, Stephen and Diane … and everyone who worked so hard to make this a success.

In Tanzania, we wrapped our trip up by giving presentations to medical students at the Muhimbili University Hospital, the main public hospital in Dar es Salaam. It was standing room only. Dr. Mukabi gave a great presentation on the medical aspects of hemophilia, and I realized how well educated the hematologists are here! What’s missing only is experience, and factor concentrates. The presentation netted two young physician students, who asked if they could volunteer for the society, which was exactly what we needed.

(Birth of Hemophilia Society of Tanzania)

We later met as a team to plot the way forward. We realized there are myriad issues to address and one can easily get overwhelmed, and then defeated. So we focused on public awareness, to try to increase referrals, to identify where the hemophilia patients are (only 16 out of an estimated 2,000 have been identified), and getting a coag machine so patients can be diagnosed in Dar es Salaam. Thanks to Richard, Dr. James, Dr. Magesa, Dr. Makubi, Dr. Stella and everyone we met for their assistance. I loved visiting Tanzania and cannot wait to return, and resume our work together.

So here in Ghana, we are just starting. Today the new Ghana Hemophilia Society will be inaugurated. The press will attend and I appeared with Martin Boakye, the president of GHS, on TV and radio. Yesterday, Martin invited me to speak at the Korle-Bu Hospital, to medical students. It was a rapt audience! I have a presentation on hemophilia, then on how my company helps developing countries with educational resources, consulting and free product. The message to them was this: as future orthopedics, pediatricians, emergency room docs, they will be the front line in identifying new cases. There are about 2,000+ cases in Ghana; only 25 have been identified! Martin’s young son is one of them.

We drove around the capital Accra, and I noted the beautiful downtown area, shimmering in the sweltering heat, and we also passed through the shanties and slum areas, which seemed to radiate waves of heat from the ground up. Martin filled me in on how many tribes exist in Ghana. Africans refer to tribes the way we often refer to our own heritage or ethnicity. I often call myself Irish, though I am American, because my ancestors are from Ireland. It’s the same in Africa: everyone is from a particular tribe.


The Atlantic Ocean pounded the beaches to our right, the same ocean that pounds the Massachusetts’s shores, as fisherman in home made dugouts prepared their rigs for a night our fishing. Women walk up and down the sidewalks at midday, balancing large loads of bread to sell to the long lines of traffic. Traffic jams exist in all African capitals, I suppose (except in Zimbabwe, where petrol is a rare commodity), and these ladies take advantage of it. Ghana in particular seems to have legions of women capable of balancing just about anything on their heads! Color abounds: in the brightly printed traditional dresses, on the painted walls of shanties and nice homes, right down to the nation’s flag.

Back to hemophilia: I had a tour of the blood labs at Korle-Bu. They have a coag machine but no reagents. It’s always something, isn’t it? Problem is, how to get reagents? Ghana has no factor except for that I brought with me, and only had their first infusion in the country in 2005, again with factor from Project SHARE. There are two dedicated physicians: Dr. Jennifer Welbeck and Dr. Ivy Ekem. What great ladies, to devote so much time on a seemingly hopeless task like building a hemophilia society from ground zero. Ghana has a lot of work to do to lay the groundwork for future care, but we will be with them very step of the way.

Africa, the “Dark Continent,” seems anything but dark. It is colorful, magical, inhabited by some of the world’s nicest citizens and some of the world’s worst dictators. Music pulsates here and seems to infect even the blood; food is fresh, flavorful and healthful, in sharp contrast to our processed and commercialized food in the US. There are white, glistening beaches, dense jungles, soaring mountains, wind-swept savannahs, torrential rains, stunning heat, adventure for all enthusiasts. If anything is dark, it is how we have left Africa behind in hemophilia care, when so much of the world enjoys prolific amounts of factor. There’s an Angolan proverb: In the larger affairs the minor are forgotten.

I have seen African children disfigured, disabled; I’ve heard the mothers tell me stoically about the deaths of brothers, babies, children and fathers who have had hemophilia. Simple bleeds, so easily remedied. Sometimes there is not even ice to ease the pain.

There’s a proverb from Kenya: A child points out to you the direction and then you find your way. It took the death of little Jose, Maureen’s son, for her to start a society in Kenya that promises big change. It took the amputation and suffering of Richard’s brother Hepson to start a society to end suffering of all with hemophilia in Tanzania; it took the fear of suffering and loss for Martin to start a Ghana hemophilia society, to help his people.

But rather than dwell on the whys, I want to get to the hows. How are we going to help this amazing place, which is aching for our attention? If you are interested in helping us solve these problems, we need strategic thinkers, visionaries, and people with connections, cash and above all commitment. Join me over the next 20 years, and help save our brothers with hemophilia.

Finally, a Tanzanian proverb: Little by little, a little becomes a lot.

(African airport handicap section)

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