The Twin Sister of Diabetes

Francine Kaufman, MD, wrote this account of her experience as a pediatrician and diabetes specialist in Haiti on her cell phone. Since the earthquake, Fran has been going to Haiti annually and sharing her experiences with Reporting on Health.

We had an Easter egg hunt this week. The kids dove at the eggs as if their lives depended on it.  They take anything we give them, no matter how age inappropriate or irrelevant the gift might be. Then we had a ceremony where kids were given candles, and after they talked about their diabetes and made a wish, they blew their candle out. It was heart wrenching to hear about their fears of rejection, complications and mortality.

In many ways they sounded just like all the other kids around the world facing this disease, but then they talked about not being able to get to the doctor, or not having all the medicine they needed, and they distinguished themselves as being different – being Haitian – from most others across the globe.  

One of the more poetic and beautiful descriptions of a life with diabetes was given by a tall and stately 19-year-old girl. Between crying about how hard diabetes has been for her and her family, and how they are all so worried about her future, she described her diabetes as her identical twin sister -- she is always there and they have a special bond that only identical twins can have.  She tries to care for her "twin" but sometimes she has a mind of her own...hard to control, hard to love, no matter how close the bond, but one who will be with her for as long as she lives. 

Looking through the medical charts that came with them, most have A1Cs > 14% -- a mark of truly uncontrolled diabetes and a predictor of poor long-term outcome and early death. We get encouraged if one of them has an A1C of 12.5% (still not good at all) and the few with lower values are those who are newly diagnosed and expected to have a lower A1C, or amongst the limited number of them with greater family resources. 

We are joined -- as always -- by the amazing Evelyne Fleury-Milfort from L.A. but Haitian born, and the family of Nancy Larco, the head of FHADIMAC, the Haitian Diabetes Foundation that sponsors this camp and all of our efforts in Haiti.  They are slowly transforming how diabetes care is provided in Haiti and enabling these kids to survive.  AYUDA – the international youth empowerment organization in the developing world that we helped start over 15 years ago with a camp in Ecuador -- is here in the form of Merith Basey and she makes camp magical.  Merith brought a psychologist from the Dominican Republic who is engaging the kids perhaps at a deeper level than we did last year. 

We’re bug-bitten, sticky and sweaty, covered in DEET and taking malaria prophylaxis. No water – unless it is bottled and boiled – crosses our lips, cholera is still in Haiti. But as in previous trips, there is something magical about being here … about being with these kids, about helping them learn to manage diabetes under the most dire circumstances and seeing them play and laugh.