Lisle Hooi
(Published in the newspaper Amigoe on the 28th of January 2026)
In the previous series, we discussed how some mutations can be good for us. We saw how evolution works and how mutations help us adapt to our environment.
In this series, we are not going to talk about a mutation that is good for us, but a mutation that makes us sick. We're going to talk about a serious condition called sickle cell disease. This disease originated in areas where malaria was prevalent in the past, such as Sub-Saharan Africa, parts of the Middle East, India, and Mediterranean regions. This disease has now spread all over the world. Sickle cell disease is relatively common in Curaçao. The fact that sickle cell disease is so prevalent in Curaçao has to do with the African origin of many residents of Curaçao.
If you have only one mutated gene, you are a carrier. If you have both mutated genes, you will get sick. If both parents are carriers, the chance of a healthy child is 25%, of a child who is a carrier 50% and of a child suffering from sickle cell disease 25%. There are two variants of sickle cell disease, namely "SS" and "SC". The "SS" variant differs from the "SC" variant in that the problems with anemia are greater in the "SS" variant than in the "SC" variant.
I had already learned about sickle cell disease in high school, but I didn't really know much about it. This changed when I worked as a director at Carmabi. I had hired a new administrative assistant. Her name was Larissa Hooi-Francisca. At one point she told me that her child Lisle, suffered from sickle cell disease. She also said that Lisle had sickle cell disease because both she and her husband were carriers of the mutated gene for sickle cell disease. Her two other children are carriers of sickle cell disease. However, I did not realize at the time how serious sickle cell disease is and only took note of what she told me.
At one point, she started talking about the pain crises Lisle was going through and that she sometimes had to be hospitalized for this. I felt sorry for her, because a pain crisis is not something you want your children to have to go through. Every now and then I saw Lisle on Carmabi. On the outside she just seemed like a healthy child. I then already knew however that she suffered from sickle cell disease and that she suffered more pain crises. However, even then I still did not realize how serious this condition is.
It was therefore a huge shock to me, and many others, when I heard that Lisle died unexpectedly on November 22, 2019, at the age of 19. Only then did it really dawn on me what the consequences of suffering from sickle cell disease can be. A few months later, her mother Larissa, together with her mother and a niece, founded the "Lisle's Foundation Sickle Cell Awareness" to create awareness and provide information about sickle cell disease in Curaçao. The foundation was established on February 22, 2020. This date was chosen because February 22 was Lisle's birthday.
Lisle Hooi
As a contribution to the work of Lisle's Foundation, I have decided, in consultation with, and cooperation of, her mother Larissa, to write this series about sickle cell disease. In writing this series, I also received a lot of cooperation and information from Dr. Meindert Manshande, who works as a pediatrician at the Curaçao Medical Center (CMC). I am very grateful to him for this! Internationally, World Sickle Cell Day focuses on sickle cell disease. World Sickle Cell Day falls on June 19 every year. I also used information that can be found on the website of the sickle cell fund in the Netherlands to write this series about sickle cell disease.
In Curaçao, about 100 children and 300 adults suffer from sickle cell disease. Every year, about 6 children are born with sickle cell disease in Curaçao. About 10% of the population in Curaçao is a carrier of sickle cell disease. Being a carrier of sickle cell disease means that you do not get sick yourself, but that you can transmit the disease. If you are a carrier yourself, the chance that you will find a partner who is also a carrier on Curaçao is about 1 in 100. As indicated above, the chance that two parents who are both carriers will have a child suffering from sickle cell disease is 25%.
The life expectancy of a person suffering from sickle cell disease used to be quite low. Today, with better drugs and treatment methods, life expectancy has increased to about 50 years.
In the following article, we will explore the cause, inheritance, symptoms, and treatment of sickle cell disease.