Daishmiro Druiventak (17) has sickle cell anemia.

How long have you had sickle cell disease?

Since birth. My mother found out when we were still living in Curaçao. I was still a baby. My nan said I looked yellow and that my eyes were yellow. We went to the hospital in the Antilles and they discovered it. We moved to the Netherlands after that.

Did people here know you what you had?

It got worse when we arrived in the Netherlands. I was two. In the hospital, my mother said I had sickle cell disease but they didn’t know anything about it. They made a call to Curaçao, to my doctor and he explained the whole thing and they sent medicine to make me better.

What were you suffering from?

Abdominal cramps, headaches. Once, I had such bad abdominal cramps, I had to crawl to my mother. We went to the hospital and I turned out to have gallstones and they had to remove my gallbladder. I’ve had a lot of surgery. It became better over time but I was still yellow, they gave me folic acid and Broxil. When I was 15 or 16, I was allowed to stop taking Broxil. That’s when I switched to Hydrea. Also because I had priapism.

That sounds difficult to talk about out?

Yes, that's why I’m saying it in Latin.

How did that start?

I had severe abdominal pains. Because my sickle cells sickle, it caused a clot of blood cells, which meant my blood didn’t flow properly and that caused the priapism. It was a true crisis. And that’s how it was treated. Since I’ve been using Hydrea, I no longer suffer from it.

How often did you have a crisis?

About five times a year. A crisis would subside after two days. Of course, it depended on the severity of the crisis.

Do you feel a fit coming on?

I feel the pain, so I know have to be alert. My mother tells me I have to take my medicine, to prevent it. I take Paracetamol.

Do you remember to take your medicine?

When I was younger, I never wanted to take my medicine, I wouldn’t take them until I got ill. And after a while, I stopped taking them, etc. But now that I sort of know how my illness works and because I want a healthy life, I take my medicine every day. I've grown up a lot. I’ve got a grasp of it now.

How often do you take Hydrea?

Twice a day. I also take folic acid. I sort of stopped taking it but that’s not very clever.

Is it hard to maintain?

It’s quite hard to take your medicine every day. But I finally have my own routine now, I take my medicine after dinner. That’s fine, as long as I take them and it's going well now.

What do you do when you go travelling?

My mum always has a bag with all sorts of medicine. Paracetamol, Hydrea, folic acid, Broxil and another medicine, Diclofenac.

Do you still have a crisis, despite taking your medicine?

No, I’ve had no crises since I started taking Hydrea, which is a year ago.

Did you suffer other serious complications?

No, I missed a year of school because I had to go to the hospital every day. That was in year five. I spent half a year in hospital. Injections every day. I’ve had so many, I don’t mind it so much now!

Do your classmates know you have this disease?

I did tell them but they don’t notice. They don’t notice I have a disease and they think I’m just a normal guy.

How did you tell them?

I often gave presentations in primary school. And one of the teachers in secondary school used to be a doctor. She advised me to tell my classmates. So then they knew but they never noticed a thing. The only thing they noticed was my occasionally yellow eyes, that’s it.

Do your classmates understand?

I like the fact they think of me as a normal person. It’s nothing special anyway, my doctor knows I’m ill and so do my parents and I think that’s enough. My friends don’t need to have consideration for it. Sports is different, I tend to get tired quickly.

Why?

Because of the anemia. I play quite a lot of sports, karate, breakdancing and I used to play tennis. I try to stay fit but I do notice I get tired.
I play sports twice a week now but it used to be more. Especially breakdancing. I stopped karate because I was too busy with school. Now that I’m on holiday, I can pick up the tennis again.

How are things at school?

Not so good. I failed junior general secondary school because I suffered from examination anxiety. No one had expected that. I didn’t see it coming, I was doing my best all year. You need a 5.5 for your exam, but I didn’t make it. A real shame. But I’m having another go at it.

And how about at home, are you the only one with sickle cell disease?

I’m the only one, my sister and mum are carriers. So I’m the unlucky one.

How much do you know about your disease?

When I had to hold a presentation, I found a lot of information on the Internet. I also discovered a lot of things I didn’t know about. That you have to really look after your teeth, for instance, because that’s better for sickle cell disease, and that you have to take 2 litres of fluids.

Are you able to do everything?

I do go out with my friends every now and then. I have all sorts of friends, Chinese, Antillean. I recently met a friend in the hospital, he has the same thing as me. But his case is different. Like me, he can do all sorts of thing, but his blood flow is really poor. I can’t remember exactly what it was. I do sleep longer after a night out but it's not as if I’m more tired. I can drink alcohol but I do have to take my medicine into account because the two don't go together. I don’t smoke.

Do you think it’s an inconvenient disease?

I’m thankful I’m not in a wheelchair or anything, the fact that I can walk and run. But I do regret not being able to do as much as others. I would love to play sports without getting so tired. I always know and feel that I’m ill. That's hard, yes. I also have to go to the hospital all the time and my friends hardly ever have to do that. I'd like to be the same. On the other hand, I’m unique. But I feel fine, it no longer bothers me, fortunately.

How often do you have to go to hospital?

Every six months. Appointments with the ophthalmologist, echoes, etcetera and sometimes, I need blood. Last year, I had blood transfusions and exchange transfusions. That’s because of the priapism. That’s also why I was doing well.

How do you see your future when you have a girlfriend?

If she was from Curaçao, I’d tell her about my disease. And I would also like to know the situation with her family and I would want her to take a test. I wouldn't want my children to suffer from the same thing. It sounds harsh but I wouldn't want to do that to them.

What do you want to be when you’re older?

An architect. I’m good at drawing and I want to use that skill later. My father and were chatting once and he asked me to draw a building. When they said it can also be a good profession, I looked into it a bit further. I held a presentation about it and I think it sounds like a nice job.