Queena (22) en Hedya (20) zijn twee zussen met sikkelcelziekte. Ze hebben allebei de ernstigste vorm; de SS-vorm. Queena studeert bedrijfseconomie aan de HS in Utrecht en Hedya studeert toegepaste psychologie aan de HS in Leiden. Ze zijn geboren in Curaçao.

Lees hier het interview met Queena

When did you realise you had sickle cell disease?

It didn’t really sink in until perhaps five years ago, when I had a severe crisis. And when Queena was sick three times in a row, I understood it was a disease that required you to set limits. What can you do and how far can you go? So when I was about 15, I realised I couldn’t live like others but that I first have to look at myself before I do something.

Did you learn from your sister?

Yes, a lot. I’m a person who can get very nervous. My sister was with me when I fell ill once. She told me to breathe calmly because I was in pain and I didn’t know what to do. She kept reassuring me and told me to breathe and to stay calm and that settled me down. I also look at her because she has a better idea of what medicine I should take. I just mix up the painkillers.

When was the last time you were admitted to hospital?

Three years ago. I do go to the outpatients clinic, for blood infusions.

What’s the worst thing about your disease?

The fact that I can’t go out just like that, especially in the Netherlands. I have to wrap up well. It’s also a big hindrance when it comes to my studies. Large amounts of stress, when I have to hand in a report or have to study for an exam, for instance, give me a crisis. If that happens, I go to outpatients. It doesn’t happen every period but when I really have to do too much and lose control, I suffer from so much stress, I have a crisis. Sometimes before or after an exam and once even during an exam, it just suddenly manifests itself.

Do the people at school understand your situation?

I talked to my counsellor about the disease but she didn’t know anything about it. She sent the social work a letter and they helped me. I was given the opportunity to resit my missed exams, so now, they do understand me.

Do your friends know you have this disease?

Yes, I had no problems sharing it with them. When I was in secondary school, I couldn’t do a lot of sports because I got tired very quickly and sometimes also because of a crisis. If they asked why I couldn’t join in, I explained I have sickle cell disease and what that means. As a result, they often helped me by getting water for me, for instance. I have a good relationship with my friends and I still see a lot of them.

Are you embarrassed about your disease?

I am now, but that’s more a sense of guilt rather than embarrassment, especially in terms of school. I can’t do anything when I fall ill during a project. I do feel guilty when I have to tell them: “I can't do anything right now, because I’m sick.” It always happens when I have to do more things and it's as if I come up with an excuse because I have to do more, so I do have a sense of guilt about it.

When you were younger, did you regularly take your folic acid?

No, not always. I sometimes forgot and I didn’t think it was that important. I will start taking folic acid again soon. I think I will do it regularly now because compared to Curaçao, I suffer more crises in the Netherlands.

Is there anything you used to do but have stopped doing?

I’ve never been a party animal. I simply told them I wouldn’t go out. So in that sense, I've not changed much. As for clothing, I've become a lot more conscious. I wrap up well to keep myself warm. And I also drink a lot. I immediately notice when I take in fewer fluids, I immediately feel a crisis coming on. The same happens during exam periods when I feel stressed and tense.

Do you understand people with sickle cell disease who don't want to talk about it?

Yes, I do. It's hard and not everyone knows about the disease, so it’s difficult to explain. And if you have a crisis, you're not in the mood to talk about it. I do understand why people would rather not talk about the disease.

Do you worry a lot about your future?

Yes, I’d like to have children. When I was a young girl, I heard that people with sickle cell disease can only have one child. I don’t know if that’s true but that's what I was told and I’d really like to have more than one. So I worry about that. I've also heard you don’t get to live as long. I don't know if that’s true either but I do worry about it. Not every day, but every now and then, yes.

Do you find it hard asking your doctor about it?

No, I don’t think I find it hard but I've never asked him anything, I never got round to it. If I have a question, I’d ask it.

Do you have a partner? And do you deal with telling him about your disease?

No, I had a partner but not at the moment. I would tell my partner, I’m very open about it.