Interviews

A stem cell transplant is still the only way to cure sickle cell disease and beta thalassemia.
Frans Smiers (59) is a pediatrician-hematologist at the LUMC hospital in Leiden. He specialises in the diagnosis and treatment of children with hemoglobinopathy such as sickle cell disease and beta thalassemia
Two sisters with sickle cell disease: Hedya
Queena (22) and Hedya (20) are sisters and they both have sickle cell disease. Both suffer from the most serious form, the SS-form. Queena is studying business economics at Utrecht University of Applied Sciences and Hedya is studying applied psychology at Leiden University of Applied Sciences. They were born in Curaçao.
A blood transfusion every four weeks
David (37) and Yessica (37) have an adopted son, Vaglary (8), who has sickle cell disease. He has HBSS.
Winter sports are definitely something we’ll try
Patrick (38) has been Villy’s foster dad for a month now.
I still have to learn how far I can go
Villy Nteko (12) has sickle cell anemia.
Two sisters with sickle cell disease: Queena
Queena (22) and Hedya (20) are sisters and they both have sickle cell disease. Both suffer from the most serious form, the SS-form. Queena is studying business economics at Utrecht University of Applied Sciences and Hedya is studying applied psychology at Leiden University of Applied Sciences. They were born in Curaçao.
Regular checks for organ damage
Marjolein Peters (57) is a pediatrician/hematologist at the AMC hospital in Amsterdam.
Better understanding of the disease will lead to fewer sickle cell crises
Dr Marjon Cnossen (45) has been a pediatric hematologist at Sophia Erasmus MC children’s hospital in Rotterdam since 2008.
Everything was spinning before my eyes
Lionel (24) has sickle cell disease. He lives in Rotterdam and studies graphic design. In addition, he’s an artist and has launched his own ‘Jazz cake’ brand.
Additional emotional and behavioural problems
Harriët Heijboer is a pediatrician/hematologist and clinic director of the Children’s department (aged 1-10) at Emma AMC children’s hospital. She specialises in, among other things, sickle cell disease in children.
Surrounded by a cloud of taboo
Greetje Zaal (57) is a social worker at the AMC hospital. Since 2006, she has been providing parent guidance for sickle cell disease and hemophilia.
Quite hard to take your medicine every day
Daishmiro Druiventak (17) has sickle cell anemia.
The sickle cell nurse
Pediatric nurse Joke Schmidt (51) works as a nurse for children with sickle cell disease at the Emma AMC children’s hospital in Amsterdam. It’s a special profession; there aren’t many sickle cell nurses in the Netherlands.

Information

On this page you will find all interviews with patients, specialists and parents. Read how others cope with their disease and what practitioners (can) do to make living with a chronic disease better!

The interviews have been taken by Foundation Artsen voor Kinderen. You can thus only find them on the Cyberpoli.