Anne Assies (15) has Diamond-Blackfan. A rare blood disease which sounds like the title of a thriller. But it doesn’t stop her trying to fulfil her dream in life: to be an actress.
Once every three weeks or so, Anne receives a blood transfusion in the hospital in Den Helder, for her DBA (explanation below). Drop by drop, so it takes a whole day. "This evening I'll go out feeling very fit. I then feel much more active and I want to be doing things. "That effect ebbs away in the following weeks until her Hb falls to around 4.8. "Often I don't notice it myself," says Anne. "I'm busy at school and don't really focus on my illness. But my parents do notice. I think I get a bit more irritable."
Have you had blood transfusions right from the start?
"Before the blood transfusions, I was treated with drugs (prednisolon). I was always tired, exhausted! That made it hard for me to concentrate at school. Whole days at school were too much for me, so I was given a modified timetable. After school, I didn't do much apart from rest. I was a member of the children's choir, but that was all I could manage. Meanwhile I stopped growing and the drugs made me put on more and more weight. At one point, I was only one metre forty and weighed 65 kilos."
Things started to get a bit better when you were twelve?
"Yes, that's when the blood transfusions started and since then I've felt much better. I'm now in the third year of secondary school. Although I do miss a lot of school, I always get good grades. I find school very easy. I understand everything immediately and do my homework during class." Anne's parents confirm this. "Anne's a smart girl, who would probably have achieved a much higher level if she hadn't been ill. We're proud of her," says mother Monique. Father Appie: "Anne will get there. She knows exactly what she wants and won't take no for an answer." Monique: "We've seen her blossom. Since she's been having blood transfusions, she's a different child. From a shy little girl who never did anything to a very open girl who's open to anything. And all that thanks to blood donors."
"I'm already an extra in Spangas and Brugklas"
Anne's intelligence became apparent in group eight, when the children had to learn the words and music for the school musical. Anne knew the script for three roles after reading the text just once. As a pirate, schoolteacher and Queen, she was a star on the stage. So becoming an actress is her big dream. "I love to get into the role of someone else. I'm already an extra in television series like Spangas and Brugklas and after secondary school, I want to go to the Media Academy in Amsterdam."
So the film set isn't too tiring?
Anne: "Oh no, I don't usually feel very tired on set. It's such fun," she laughs. "And the rest of me is very healthy! It's only a few problems with my blood. This summer, there was another issue when they found that I was starting to make antibodies against my own and the donor blood. But thanks to Sanquin's research techniques, that problem was fortunately resolved. I now get specially selected blood from O donors. Luckily Sanquin always has enough in stock. Before every blood transfusion, they check whether my blood reacts well to the donor blood in the Sanquin laboratory."
"My dream is to be an actress "
Now that everything's under control, it looks like nothing is standing in the way of a glittering future as an actress. Learning scripts is no problem for her and although she comes across as being rather shy, she's actually not afraid of being noticed. "Anne is an achiever and she's different from her friends because she knows exactly what she wants," according to her parents. "They think that's very special," says Anne. "Maybe it's because here in hospital, I have a lot of time to think about my future and to figure things out. And my dream is to be an actress."
What is Diamond-Blackfan Anaemia (DBA)?
Diamond-Blackfan Anaemia (DBA) is a rare and serious form of anaemia in which bone marrow fails to produce enough red blood cells. The symptoms vary in each child and vary from mild - for example tiredness and a pale skin - to serious and even life threatening impairments such as heart defects and skull deformation. The treatment usually starts by administering corticosteroids, but this impedes growth and the effect declines over time. Regular blood transfusions may be used to treat serious DBA. Sometimes a bone marrow transplant is considered.