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Sunday, January 17, 2010

Hemophilia in Haiti: How to Help?


Many people in our community have asked me if we can do anything to help those with hemophilia in Haiti. As you are all aware, Haiti, a small country of 10 million that shares the island of Hispaniola with the Dominican Republic, was hit with a massive earthquake last Tuesday, which destroyed the capital of Port-au-Prince. The images are horrifying: hundreds of dead bodies left to decompose in broad daylight; thousands with crush injuries; thousands without food, water or shelter; hospitals collapsed, all the government ministry buildings collapsed, even the presidential palace.

I visited Haiti in 2002 with the purpose of starting a national hemophilia organization, nothing of which existed. I have always had concern about Haiti. Many years ago, when I worked as a psychologist for the state of Massachusetts, I worked with many Haitians and developed friendships and learned about their culture. I felt in 2001 that Haiti was quite ignored by the international hemophilia community. I was busy working with the Dominican Republic, which borders Haiti, and kept wondering about hemophilia care in Haiti. Eventually, a Haitian father of two boys with hemophilia contacted me to request factor. That's when I planned my trip and went.

It was one of the poorest countries I had ever seen. Not much by way of infrastructure, clogged, snaking roads through the capital filled with hard working people and trucks and cars belching black exhaust. There were no beggars because there was no tourism; and it struck me how hard everyone was working. I stayed at the Christianville Mission, where the father was the director. A beautiful mission compound that had state of the art dental and optometry clinics. I stayed for a week, helped put together a board of directors, met with some doctors and found a businesswoman who eagerly wanted to help. Everyone was gentle, kind, polite and eager to start the project. I left a few pounds lighter and very happy.

Then came political unrest, and kidnappings of Americans. Everything had to be halted. My contact, the father, left with his families for a few years, and came to the states. I have not heard from him now in a few years.

So hemophilia in Haiti? There is no care. No one knows who the patients are. There was no patient registry, no clinic for hemophilia, and certainly no factor. The only factor they ever have had is what I sent from time to time, and that was quite a few years ago. There was nothing before the earthquake, and now, it will be another year, maybe more, before I can return and hopefully restart the project.

If you want to help Haiti, help it for every other reason besides hemophilia; the country and its long-suffering people need your help. Give money for the orphans, for the hospitals, for the food programs, for clean water. Give to the American Red Cross, Oxfam America, or any of the dozens of relief organizations that are now helping. Give to Christianville, the organization I worked with, which provides so much care and education for so many. Give... and pray. Haiti is filed with decent, good people who have endured decades of repressive regimes, and natural disasters including hurricanes, mudslides and now an earthquake. Why? Why always Haiti? There are no answers, except to continue to give.

I look forward to the day when I can report that we have begun our program for hemophilia again.

Great Book I Just Read/Movie I Viewed
The Road by Cormac McCarthy

I finished this book the evening before the earthquake and couldn't help but draw parallels. A book about a post-apocalyptic world in which a father and son, no names given, walk endlessly in an ash-covered landscape, barren and bitter. They witness man at his absoulte worst, struggling to survive a holocaust, turned into animals, cannibals. The writing is absolutely haunting; the book was hard to put down. I actually began and finished it in one evening. McCarthy, author of No Country for Old Men, is a literary genius. I saw the movie first, still out at cinemas if you want to catch it, which I thought was one of the best I'd seen in a long time. It's not a feel-good movie, but it is powerfully moving in its simplicity, solitude, desperation. The ultimate story of a father's love for his son. Three of four stars.

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