Sickle Cell Disease Speaks All Languages

Thanks to the Health Union, I was able to attend and speak during the sickle cell event in my home country, Suriname, South America. The year 2022 has so far been a positive and educational year for the sickle cell community in Suriname. I also had the opportunity to contribute to sickle cell education in different languages.

Creating a sickle cell-friendly environment

In January, the first sickle cell treatment room was officially opened for adult sickle cell patients at St. Vincentius Hospital, also known as the RKZ. Doctor Nicole Oldenstam, an Internist Hematologist, has set up and executed several projects to improve care for adult sickle cell patients and promote care sustainably. More importantly, these projects will increase awareness about sickle cell disease.

The sickle cell treatment room has now become too small due to a large number of sickle cell patients, so she is considering expanding it. This is a positive development because the goal has partly been achieved: “Creating a sickle cell-friendly environment for sickle cell patients.”

World Sickle Cell Day

On Sunday, June 19, 2022, the team of Hematologische Zorg Suriname celebrated World Sickle Cell Day in the Courtyard by Marriott Paramaribo (the sponsor of our event). On this day, in collaboration with various medical specialists, we informed the community about sustainable living with sickle cell disease.

During this event, we looked at sickle cell disease in both children and adults from different angles. We shared general information about sickle cell, how to deal with a pain crisis, the effects of sickle cell on the eye, mental health with sickle cell, and sickle cell in children. We also learned about the social challenges of sickle cell patients from 2 experienced experts. It was the first collaborative event in Suriname that provided the community with this detailed level of information about sickle cell.

Team work makes the dream work

The speakers of this event were:

• Sayad Bhikhie,MSc, Ophthalmologist
• Constancia Daniels Crisis, MSc, Child and Adolescent Psychologist
• Nienke Duppen,PhD, Pediatrician
• Varida Haarloo, MSc, Optometrist and Orthoptist
• Nicole Oldenstam, MSc, Internist Hematologist
• Obrego Kortstam, Sickle cell warrior
• Andressa Hunsel Ambrose, MSc, Sickle cell advocate
• Sandrina Beverdijk Hunsel, MSc, Moderator

Sickle cell education in different languages

Sickle cell awareness is something that we as a team are constantly working on. Doctor Oldenstam has noticed in recent months that there is a great need for information about sickle cell in multiple languages. She has started putting together a team to make this possible. It is important for doctor Oldenstam to reach the sickle cell community and to provide tools. In doing so, she can make a sustainable contribution to awareness.

Sickle cell disease speaks all languages. So, it is our responsibility to provide sickle cell education in different languages. The idea was born to make a series of infomercials providing education on sickle cell disease in Dutch, Saramaccan, Auccan, and Sranan Tongo (the most common local languages in Suriname). We hope to make a sustainable contribution to improving availability and accessibility of information about sickle cell disease. The videos can be viewed online via YouTube.

Continuing the work

We will always be committed to our sickle cell community; taking all feedback we receive into account so that we can continue to work and improve on the best care!

Our thanks go to all our supporters and sponsors who make these projects possible.