There are so few donors of non-European origin, thus little help if my family gets sick.Read more
I met Bernis (27) at Stuivenberg Hospital in Antwerp, where she is being treated for her illness: sickle cell anemia. Bernis is just recovering from a severe 'crisis', as sickle cell anemia patients call it. At these times, the patient suffers excruciating pain. "I had to be admitted to intensive care because the pain was unbearable. Even morphine wasn't helping anymore," says Bernis. She has suffered from sickle cell anemia her entire life. "As a child, I didn't know what was wrong with me. I was in pain but I couldn't explain where it came from.”
When Bernis was young, she mainly suffered pain during short 'crises' but she has since had to learn to live with chronic pain. But it's not always easy. "I was a rebel. If I was told that I couldn't do something, I did it anyway. I wouldn't listen. I didn't want to accept that I couldn't do everything I wanted to because of my illness. But afterward, crying, I would be forced to admit that I should have done as I was told. I was so weak and in so much pain, all because I absolutely had to have my way, that I always regretted it."
"As I got older, the periods when I was in pain and very weak became longer. I spent more time in hospital than in school. I'm shocked I was able to graduate (laughs weakly). When you're a child, you picture yourself as an adult and dream of the things you're going to achieve. There was no way I could live up to that image. And that's quite hard to take - emotionally, I mean."
Bernis is currently waiting for a suitable stem cell donor, whose tissue matches with hers. She has brothers and sisters but because of the many blood transfusions she has had to undergo, she has built up antibodies against her family members' tissue, which means that she now has to look outside her family. "I don't think about the future anymore. I've learned to live more in the moment. I have hope, of course, but I live one day at a time. I don't want to be disappointed anymore."