Sarah Adelegan Talks About Being a Twin Living with Sickle Cell

If you are not from Africa, you may not understand why 24-year-old Sarah Adelegan has had to deal with multiple hospital admissions, a host of complications and surgeries. She tries to explain sickle cell pain; ‘It’s unpredictable when you’re going to get the pain,’ She says, raising her eyebrows. ‘You have no idea what triggers the pain. It just strikes and can ruin your whole day. Just normal activities like squatting and sitting on the floor become extremely painful. It is sporadic and not in a synchronised pattern.’

‘I died briefly in Nigeria’, she recalls the incident that precipitated her emigration from Nigeria to the UK 12 years ago. ‘When you have this disease, something benign can be exaggerated to something complicated. I caught a cold; then it progressed to pneumonia. I was in the hospital for four months; I couldn’t walk, I can barely talk, I was on the breathing machine, I died for about two minutes, the doctors had to do a quick surgery on my chest. Once that had happened it was a wake-up call for my parents’

Sarah Adelegan and her twin sister Susan are among the 15,000 people in the UK who suffer distressing pain due to sickle cell disease, a genetic condition which mostly affects people of African and Caribbean origin. Like most sufferers, the Adelegans inherited the faulty gene from their parents who are both carriers. The twins’ haemoglobin does not absorb enough oxygen, and this shortage changes the shape of their red blood cells from round to the eponymous sickle.

The abnormal cells become sticky and sometimes become stuck in the blood vessels, preventing parts of the body from getting enough blood. Those areas become acutely painful (often called sickle cell crisis). The only cure is a bone marrow transplant, but it is so risky that it is seldom done.

Sarah and her twin sister were born in 1996, in the days when there was no genetic education in Nigeria. Their marketing manager father Dapo Adelegan lives in Lagos with their mother Abimbola, an entrepreneur.

‘Immediately we were born, the doctors noticed that we were jaundiced. They ran a series of test and discover that we had sickle cell. Later, the doctors told my parents that our life expectancy was really low. With luck, we might live to the age of 60. They said our parents should move us out of Nigeria to a country with adequate healthcare facility for our condition,’ she says, in the Buckingham flat she shares with two fellow students at the town’s university. ‘That was devastating for my parents, especially my mum, because she went through a lot just to get pregnant with us.’

Sarah, the older twin by 30 seconds, reads international studies at the University of Buckingham. Her twin sister studied Law at the University of Birmingham and now lives in London. As Sarah has rarely met anyone who has heard of sickle cell, she says it would be ‘very lonely’ to live in the UK without Susan. ‘I feel like she is the only one that understands what it is to have sickle cell. Not a lot of people understand and can relate to this disease. Sometimes ago, the paediatric section of the NHS for young children had a sickle cell support group where they encouraged people to come to the youth club every Saturday to make friends with each other. My sister and I would go, but there was barely anyone there, so having her going through things with me even though she’s had a slightly easier experience has been a lifesaver,’ She smiles.

Sickle cell affects sufferers differently — Sarah experiences far greater tiredness than Susan. ‘Growing up, I was just exhausted all the time that I actually forgot people have energy,’ She recollects. ‘Even just walking up the stairs, I would be out of breath. I used to faint so many times to the extent that my mum had to notify my school what they needed to do if I fainted. I didn’t feel like a normal child. I was so sickly and barely ever function. When my peers were running around and playing, I was thinking about how to survive. Because life has become so precious to me, I felt there was a bigger fish to fry at this very time. I didn’t like the feeling of knowing I couldn’t do what my peers could do. This made me a very quiet and introverted person. I became almost anti-social.

‘But Susan was more social and active. She ran around with other kids, she had more friends and was just a stronger person than I was,’ Sarah says, showing their childhood picture. ‘She hasn’t had half of the issues I’ve had. Even now that we are grown, I remember times that I would call her crying and she would be at a party or doing something. She was having the time of her life at the University of Birmingham.’

For Sarah, the most exasperating time of her life was when her condition altered her life plans. Her goal has always been to be on the same level as her twin sister. They both started university together in 2015. Sarah went to the University of Leeds while Susan went to Birmingham. They planned to graduate after three years, move in together and go into their careers, but that didn’t happen because Sarah had to switch to the University of Buckingham.

She recalls her experience vividly at Leeds that saw her failing and dropping out while her sister was progressing in Birmingham; ‘I was depressed in the year that I was at the University of Leeds. My health was terrible. I was admitted to the hospital seven different times. I couldn’t go to classes; I was left out on my course works. I was behind in writing exams. It was hard to catch up. It just got to a point where I got tired and frustrated with this disease taking over my life that I just thought to myself; it will be better to leave university and just take a break, get my health sorted and then come back.

‘She ended up graduating last year, and mine was extended because I had to leave university for a year break and then come back to the University of Buckingham. I’m graduating next year, so it’s frustrating because she is my twin and you are supposed to be at the same level as your twin. We started at the same point, but what can I do,’ says Sarah with teary eyes. ‘It makes me think about the future how I’m going to keep a job after university because if you have a 9–5, they expect you to come to work every day. I can’t miss so many days at work before they start getting concerned. I think about those things.’

Sarah dreads the possibility of passing sickle cell to her own children. She dreams of marrying only a man with the compatible genotype AA (someone who does not have the faulty gene). ‘It’s such a depressing thing to think about,’ she makes a grimace. ‘The safest option for me is to be with someone who is AA. It’s extremely sad, but it just wouldn’t make sense for me to enter a relationship knowing that my children will most definitely have sickle cell. My mum had to put her career on hold when I and my sister health began to deteriorate. I don’t want that to be my story whereby my children’s health is such an issue that we can’t even live a normal life. It’s not really romantic, but I have to be practical.’

Despite the burden of sickle cell, Sarah is not only happy but optimistic. Although she still has painful crises, she notes that her health is improving. She has not been admitted to the hospital for two years which is quite impressive for people living with her condition. ‘I do feel good has come out of having sickle cell,’ she agrees cheerfully. ‘It just makes me appreciate and value life more. I appreciate every day; the days I’m pain-free, and the days I’m not on the hospital bed. The older I get, the less problem I have with sickle cell.

‘I’m not sure of a cure, but I do know that there will be medical advances in the future that would allow people who have sickle cell to live almost normal lives. I’m quite sure of that. I’m so happy and grateful for the treatment I’ve been given in this country. Being here has given me so much hope.’