Sickle cell anaemia

Pamela Gyebi-Ababio, 18 at the time of this interview, from Croydon in South London, has three AS-levels and wants to be a doctor. She also has sickle cell anaemia.

"I've known I've had sickle cell anaemia for as long as I can remember. I'm determined it won't stop me enjoying my life or achieving my goals. I did miss a lot of school one year because I was unwell, but I repeated the year and I did AS-levels in Maths, Biology and Chemistry."

A sickle cell crisis

"The main effect of sickle cell anaemia is that I can get a sickle cell (sickling) crisis. My red blood cells, which are sickle-shaped rather than round, get stuck and block the blood flow. Resting, drinking water and keeping warm can help stop a crisis coming on, so I make sure I look after myself.

"Crises come on in different ways. Sometimes I feel pain in my arm, deep in the tissue. Sometimes the pain is in my leg or waist. This is worse, but I can usually deal with it. It feels a bit like electric shocks. I take painkillers and drink lots of water to try to stop it coming on. There are times when it's too painful to move, and I just have to rest in bed.

"I had crises throughout my childhood and have been hospitalised several times. I love dancing and got into the Royal Ballet School when I was nine, but I couldn't continue because my health was bad. That was disappointing."

Coping with crisis pain

"I had my most serious crisis when I was 16. I was taken to hospital in an ambulance on Christmas Eve because I had severe pain in my shin bones. It was awful, and I couldn't put any weight on my legs. I had been experiencing pain there for a few weeks and joked with my friends that I was getting old, but suddenly it got worse.

"In hospital they gave me morphine, and I was allowed home after five days. The pain was caused by sickle cells building up in my bone marrow. For the next few months, the pain was bad. I couldn't walk without someone to lean on, and I wasn't able to go to school again until April.

"I made myself learn to use a walking stick, even though I hated it because it made me feel old, and I went to school. Just being there helped. That was the school year I had to repeat, but my school was very supportive."

Missing out

"Friends from church and school came to see me, but there were so many parties that I couldn't go to. In the end, I asked my friends not to invite me so I wouldn't know what I was missing. Mostly, all I could do was rest. Sometimes I couldn't even listen to music as the bass hurt my legs.

"Pain can make me feel frustrated, and I get snappy. Once, in hospital, I asked my little sister to get off the bed, and I didn't say it in a nice way. It's not like me. I went to a psychologist to help me deal with the pain. She helped me gain confidence and realise that I need to put my health first. Now if I'm ill I'll take the day off, whereas before I'd carry on and do my work, which would make me worse."

Blood transfusions

"I started having blood transfusions in April 2007. The idea is to stop my body producing sickle cells.

"Before my first transfusion, I was nervous. I'd seen the ward and knew I'd have a needle in my groin, but they used a local anaesthetic, and I didn't really feel anything after that. It took about an hour.

"Three or four days after that transfusion, I went on a trip to Hastings with my church and I played football for the first time in two years. It felt so good! I hadn't been to a park for two years because I'd been unwell, and it was wonderful not to be tired or aching. I felt normal. I felt like me.

"I have transfusions every four weeks through a cannula (a small tube inserted in my arm), and that will continue for two years. Unfortunately, because of the blood transfusions, I now have too much iron in my blood, so I also have to have treatment to reduce that.

"I still have the odd day, or even the odd week, when I feel unwell and have to take it easy. I started getting a crisis during my AS-levels and had to go to school on a crutch, but the school gave me extra time and let me rest in the nurse's room.

"Luckily none of my three younger sisters has sickle cell anaemia. In the future I'd like to become a doctor and open a health clinic abroad, or be a pathologist and research disease. I haven't decided yet."