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.

Lees hier het interview met Hedya

When did you realise you had something that others didn’t?

When I was 8, I suffered from a severe crisis after a bout of pneumonia. The doctor tried to explain what I had but I didn’t truly realise what the disease was about until I came to the Netherlands to study, four years ago. I knew there were issues with my blood but I didn’t realise it was this complicated. I thought I had a curable blood disorder but now, I know that's not the case. That's when I started to take it really seriously.

Is it troubling you right now?

I do have complaints but not as much as when I lived in Curaçao. I'd only just arrived in the Netherlands when I had three severe pain crises, one after the other, the doctor decided to put me on Hydrea and since then, I've been much better. I take it every day.

Did you go to hospital a lot when you were younger?

Yes, when I was a young girl, at least once a month. In Curaçao, we often went to the beach and due to the difference in temperature between the water and the land, I immediately suffered from a crisis when I got back to the beach. I also often had to go to hospital because I had the flu or an infection.

Did you take a lot of medicine when you were young?

No, only folic acid. No antibiotics, only when I had an infection.

Were you admitted to hospital a lot the past few years?

At least 2 to 3 times a year. Not because of the beach, because I no longer went there, but because I suffered from throat infections or pneumonia all the time. I was admitted to hospital only two months ago. First for a week, then I went back home for a week and then I was admitted for another two weeks, so three weeks in total. That may be because I started on a lower dose of Hydrea because I was feeling better but as I said, I had a crisis later. I also suffered from pneumonia, so that may also have been the cause.

What do you do to prevent a crisis?

As soon as I have pneumonia, I go to hospital because otherwise, I’ll have a crisis. Erasmus hospital has a special sickle cell number I can call at any time. I tell the nurse what’s wrong and then I can start an antibiotics course right away. I even have it at home, so I can start taking it immediately when I get a fever. That's how I try to ward off a crisis.

How much do you know about your disease?

The nurse explained a lot to me. How I have to use painkillers, I didn’t know at first. Before, I took one with the other when I had a crisis. Now, I have very clear instructions when to take what. I’ve also looked for information on the Internet myself. I read a lot about the disease, about painkillers and also how infections start. The last bout of pneumonia I had started with a severe pain in my throat. I thought I just had a sore throat and took some Paracetamol and some cough syrup. Later, it turned out to be the onset of pneumonia. And I also read that your appetite may diminish when you have pneumonia and that’s indeed what I had. I didn't taste anything and didn't feel like eating.

At school, did you tell your friends about the disease?

I still find that very difficult. If you tell people you have problems with your blood, they immediately think you have a virus. People are very fearful about it, as if you're suffering from something contagious that's going to kill you. That’s why I don’t tell all my friends. I did explain everything to a close friend and she was with me when I had a crisis. That was quite horrible for her because I shouted a lot and became aggressive due to the pain. I didn’t want to have anyone near me, so that was a bit wild. That’s why I’m a bit hesitant about telling others and why I take my medicine somewhere quiet.

Are you embarrassed about your sickle cell disease?

I was embarrassed when I was in hospital and people came to visit me. I had blood transfusions and drips and they looked at me as if I was suffering from something terrible. My parents were always there but I didn’t want my classmates to visit me, I thought it would be too scary for them. I was afraid they were going to think all sorts of things about me.

Do you feel guilty about suffering from a disease?

No, I don’t. Over the years, I've had a lot of pain crises and I missed a lot of classes. But when I look at what I've achieved, I don’t feel guilty at all. I have goals and work hard to achieve them. Each time I do, I’m really happy because, despite my sickle cell disease, I achieved my goals.

How did you achieve those goals?

Despite missing a lot of classes, I managed to finish secondary school and now I’m starting higher professional education. If I succeed, I’ll be very happy with myself. I’ve been through a lot to make it possible. I’d only been in the Netherlands for a short while when I had three pain crises in a row. I told my mother: “I want to stop my studies, I’m coming home.”
My father also had faith in me. He said: “Queena, you can do it, just go for it.” I spoke to my counsellor extensively and with the school’s assistance, I managed. I had missed almost two blocks and I didn’t know where to start. So I went to the counsellor; she was my confidante, the one I told everything and she then explained the board of examiners and the teachers what was going on. That’s how I achieved my goals.

Is there anything you used to do that you don’t do anymore?

Oh, yes, I no longer drink alcohol. I used to love a glass of wine but I don’t drink at all now. I’ve not had alcohol for a year now and I hope I can stick to it. I've also calmed down a lot, I used to be very active. I went out with my friends every weekend but now I tell myself: “Queena, look at the others. They’re healthy and you're not. If you come home from a night out, you’ll have a crisis. So you better just take it easy.” I told my friends I wouldn’t go out as much but that was quite difficult. They didn’t understand. Also because I couldn’t be entirely honest with them. I told them I had a lot of school work. Because I was still afraid they’d think differently of me or start feeling sorry for me.
Before, I carried on as if I didn't have any disease. Two years ago, I had a severe crisis because I didn’t have a flu jab. I thought: “why take a flu jab? I never had one in Curaçao either.” But when I kept getting the flu, I realised that I’m not like other people and I have to take that into account.

How do you see your future?

I want to stop taking Hydrea but I can’t suddenly stop, you have to phase it out. I’m afraid I’ll have more complaints if I stop taking it all together. Taking Hydrea also means you can’t have children, you need to have stopped taking it for a while before you can start having a family. Every day, I think about how to go about it. I’d love to go back to Curaçao in three years, preferably without Hydrea. I don’t know if I’ll succeed, but I do hope so. I do want to start a family, you know.

Do you have a partner? And would you tell him about your sickle cell disease?

I don’t have a partner at the moment. I find it hard to bring it up but I will try because I have to. I have to tell them. The doctor at Erasmus told me I first have to ask my partner about his blood type. What if my partner is a carrier? That would be the end of it and that's hard. I don't want a partner who’s a carrier. My parents didn’t know they were carriers. I don't want my child to go through all of that, it's horrible. I don’t feel sorry for myself, I've achieved all my goals. If you rest well and eat a healthy diet, you can live a normal life.

Do you think about your disease a lot, whether you will continue to be well?

I felt so sad the last time I was hospitalised. I had lowered my Hydrea dose a month before and suddenly, I suffered from a crisis. I thought I was going to have to take this medicine forever. That would be awful because I've always said that if I go back to Curaçao, I don't want to take the Hydrea with me. I really want to wean myself off the Hydrea but I don’t know how and that’s always on my mind.

What would you tell children who’ve just found out they have sickle cell disease?

Look after your health; eat a healthy diet, rest well and always continue to pursue your goals. Even though you have a crisis and you go through a lot, try to see the positive side of things. I've achieved a lot, despite being a sickle cell patient. You too can do anything you want, just like anyone else but you do have to be careful and devote a lot of attention to your health. You have to carefully listen to your body.

Is there something you would like to say to the practitioners?

If I have a pain crisis and take painkillers, I feel dozy for a very long time and I can’t concentrate properly. And if I then have an exam period, I’m totally confused for a couple of days. But it’s the only solution because if you have such a severe pain crisis, you want to get rid of it immediately. In Curaçao, they put you on a drip first, so a lot of fluids, and they give you painkillers only when things don’t improve. Here, it’s the other way around. They immediately give you painkillers, followed by fluids. Perhaps they should give me less morphine.