The second project in the Terrific Teens programme of work facilitated the creation of Patient Voices Reflective digital stories in which storytellers explored the experiences of teenagers with Sickle Cell Anaemia, their siblings, their families and their parents.This project was funded by Imperial College Healthcare Charity and North West London CLAHRC. We are grateful for the help of the Sickle Cell Society in identifying, contacting and recruiting participants. When designing the approach for the workshops around Sickle Cell Anaemia, it became apparent that siblings and other close family members might have valuable insights into the condition and so when we ran the Patient Voices workshops for Sickle Cell in October 2017, there were three parallel workshops, one for parents, one for children with the disease and one for siblings and close family members.

Sickle Cell Anaemia

Stories from teenagers with Sickle Cell Anaemia

The 15-year challenge
Timeyin was only three years old when she had her first stroke. Monthly blood transfusions followed in an attempt to minimise damage to her liver and other organs. A severe crisis 11 years later resulted in a serious chest infection and admission to intensive care, where the care was less than caring. Since then, Timeyin has cared really well for herself and is proud to be a stroke survivor and a strong, independent young woman living well with Sickle Cell Anaemia.

My life with Sickle Cell
14 year-old Malachi is a keen dancer. He also has Sickle Cell Anaemia. His first crisis began with excruciating pain in his stomach at 3.45 one morning when he was only six. His first blood transfusion quickly followed. Regular transfusions, drinking plenty of water and staying warm enable him to manage the condition and mean that he can still keep up with his friends and enjoy dancing.

A Crescent Moon
When Caroline was 13, she found herself in excruciating pain and ended up in hospital with her first Sickle Cell crisis. Unfortunately, the risk of a crisis means that she will not be able to join her friends undertaking the Duke of Edinburgh award. So she has found other activities that are a bit less challenging, and is determined to meet – and overcome the challenge of Sickle Cell Anaemia.

Joyce is one of the lucky ones with Sickle Cell Anaemia – when she goes to A&E, she is treated like a princess and goes to the head of the queue. Since her first Sickle Cell crisis when she was five, Joyce has, for the most part, managed her pain at home. Some years later, what seemed like a ‘regular crisis’ became so bad that hospital was the only option. Surgery, dehydration and extreme pain have given way to hope and optimism and Joyce is becoming stronger every day.

Saturday soup
Sickle Cell Anaemia makes it hard for young people like Temitayo to run and play sports because they get tired easily. But his mother takes good care of him, feeding him nourishing food and making sure he stays warm. So, although he is still affected by joint pain, he has fewer transfusions and fewer hospital stays and he’s able to enjoy YouTube and playing games virtually and online.

How God works miracles
Although Omari has Sickle Cell Anaemia, he’s never let it keep him away from his passion: basketball. Even a silent stroke, a painful crisis and monthly transfusions haven’t dampened his enthusiasm for the sport. Faith, determination and great care from his mum led him to win a basketball scholarship and the future looks bright.

Precious’ life full of praises
Precious had her first Sickle Cell crisis when she was two. At one point, the pain was so bad that she asked her parents to buy her a new arm and leg…. And even high doses of morphine did little to relieve the pain during her worst crisis. Stress is one of the things that can trigger a crisis so Precious has worked closely with her college to negotiate manageable schedules. Hopefully her dream of becoming a paediatrician and helping other children with Sickle Cell Anaemia will come true.

A way to change
Having Sickle Cell Anaemia is not great. But Joshua has met the challenge head on, persuading others that he is capable of doing many of the things that other young people without a blood condition can do. Despite experiencing the extreme pain of a Sickle Cell crisis, Joshua leads a mostly-normal life and looks forward to a cure for this agonising disease.

Stories from their parents

Not alone
Caroline knew nothing about Sickle Cell Anaemia when her new baby daughter was diagnosed with the condition. When she had her first crisis, aged two, she learned too much about pain and about the helplessness and frustration of being able to do nothing to alleviate Precious’ suffering. Caroline’s ceaseless research, together with her experience of caring for her daughter have given her the knowledge – and the confidence to ask for the support they need.

My joy, my strength
Emily’s life fell apart when she learned that one of her tiny twin daughters had Sickle Cell Anaemia. Her fears of how she would manage to care for her were compounded by fear of judgement from others in her community and despair at the lack of understanding and support from health professionals. Now, having found support and fought for improvements in the care of her daughter, Emily is able to stand back and see her daughter as a strong, responsible, courageous young woman.

It’s okay to be tired
Cheryl knows she is a good mother to her three children, but she is tired – weary from many losses, a diagnosis of lupus, two children with Sickle Cell Anaemia and, now, the menopause. Honesty and love have helped Cheryl and her children cope with the unpredictably of Sickle Cell and of life and appreciate what they have.

Men! Stop running away!
When Rita’s baby daughter, Caroline, was born with Sickle Cell disease, her husband stepped out for a breath of fresh air…. And never came back. The disease is considered by some to be a curse and it’s true that Rita’s life has not been easy, caring for Caroline as well as her other children. But she has watched Caroline overcome the pain and grow into a bright, vibrant, confident young woman – someone of whom her father could be very proud.

A Precious life…
Ade’s ponders how to answer his daughter’s plea for a new arm and leg to replace her existing painful ones; how to respond when she is in hospital, along with her brother, in excruciating pain. Ade’s daughter has Sickle Cell Anaemia. In search of a better life outside London, the family faces uncertain care and Ade has had to fight for knowledge, research, empathy and care, but he knows it is worth it for the life of his precious daughter and for all those affected by Sickle Cell disease.

Let me be great!
Benny’s son, Joshua, is a blessing: a much wanted child – and a challenge: he has Sickle Cell Anaemia. Benny faces the challenge of restricting his activities in the hope of preventing crises and saving his life, but Joshua is bright and determined and has his own ideas about what he wants to do. Together they find ways that enable Joshua to soar, just like the Origami birds he loves to make…

Stories from their siblings and family members

Twins but different
Bemigho and her twin sister, Timeyin, are different in lots of ways, not least because Timeyin has Sickle Cell Anaemia. Bemigho tries to protect her sister in lots of ways, including not talking about her condition to their friends. But, as they grow older, she realises that maybe one way of protecting her sister is by telling others about the disease, so that they can understand it better.

My sister with a challenge
Emiko’s older sister has Sickle Cell Anaemia. Emiko describes how worried he feels when she has a crisis, how he hates to see her in pain, and to know that she is having a blood transfusion and how hard it can be to concentrate on school work when she is in hospital. But the bond between them remains unbroken and he has learned that facing difficulties can also result in beauty.

Even at the age of 10, Jesse has learned how to solve problems and cope with difficulties: being alone, having to postpone holidays, watching his sister in pain, fearful of what might happen to her. Jesse’s sister, Joyce, has Sickle Cell Disease, so Jesse has to be positive and try not to worry, and remain determined not to let fear win.

What I see…
11 year old Joshua has learned a lot about Sickle Cell Anaemia: his brother Tayo, who has the disease, has to take medication, drink lots of water and get up in the night to use the toilet, which disturbs Joshua’s sleep and can make it hard for him to concentrate at school – it’s also hard to concentrate when Tayo is having a crisis or in hospital. Although he doesn’t always know what to do, he can help by comforting Tayo when he’s in pain and by staying positive about doing things together as a family..

Grace is 8 and her 12 year-old cousin, Omari, has Sickle Cell Anaemia. Although they are close, and she has been to hospital with him, she doesn’t know much about the the disease and imagines that others also don’t. She encourages anyone and everyone to ask questions and find out more so that they will understand the condition and know how to help.