Father and daughter launch book for sickle cell disease awareness

Kehinde (left) and Angel Salami both have sickle cell disease

"Today, it's starting to feel cold. The cold weather can make me very poorly when I play with my friends. My teacher helps me dress up really warm at playtime so I don't have a sickle cell crisis."

These words are inspired by the real-life story of Angel Salami, a teenager from south London who has sickle cell disease.

She was diagnosed at birth, while her father Kehinde only learned he had the condition when he experienced a sickle cell crisis at university in his 20. Sickle cell crises are painful episodes which happen when the blood vessels get blocked, and can last up to a week.

They are now featured as the main characters in My Blood, Your Blood, a book written by Laura Henry-Allain to raise awareness of the disease and to encourage blood donations in black communities.

The book was launched at the Van Gogh Primary School in Brixton, south London

Angel, aged 13, and Kehinde launched the book at Van Gogh Primary School in Brixton on Tuesday.

Kehinde told the BBC he was a "very proud dad" to see his daughter "at the front and centre of a book that's about her life".

"She's talking about a condition that affects her daily, discussing her experiences and raising awareness," he said.

Angel said she hoped the book would "make people intrigued to learn more about blood disorders, and to donate blood in the future to save people's lives".

The book was commissioned by NHS Blood and Transplant (NHSBT), and will be available in all Brixton primary schools and selected blood donor centres across the country.

What is sickle cell disease?

People with sickle cell disease produce unusual sickle or crescent-shaped blood cells, which can block blood vessels

Sickle cell disease refers to a group of inherited conditions which cause red blood cells to be produced in unusual sickle or crescent shapes.

These can block blood vessels, causing sickle cell crises. The cells do not live as long as healthy red blood cells.

The disease can cause also anaemia and a risk of serious infection and complications including organ damage and strokes.

It is a lifelong condition, but can be treated through medication and blood transfusions.

Blood donations are vital, particularly given a single patient requiring regular blood exchanges can need blood from up to 100 donors each year.

The disease is particularly common in people of Black African or Caribbean descent.

This is because their ancestors developed these types of cells to protect themselves from malaria.

There are about 15,000 people living with sickle cell disease in England, according to the National Institute for Health Care Excellence.

South London has the highest concentration of people in the UK with the condition, according to the Haemoglobinopathy Registry, with more than 3,800 people living with it in the area.

My Blood, Your Blood was written by Laura Henry-Allain (second from left) and illustrated by Zenovia Grant (far left)

Angel mostly manages her condition with medication, but had to be given a blood transfusion after a severe sickle cell crisis when she was younger.

Kehinde explained: "Her first crisis was a really frightening time. Angel's tongue turned blue, and she was rushed to hospital with dangerously low haemoglobin levels and a lack of oxygen in her blood.

"Angel required a blood transfusion and blood exchange to recover. I am forever grateful to those donors, as without that blood she might not have recovered."

Angel and Kehinde hope that by sharing their story they will encourage more people, particularly those in the Black African and Caribbean community, to give blood.

When patients require a transfusion, it is vital that the donor's blood type is as close to the patient's blood type as possible.

Rexford Osei-Bonsu, manager of the NHSBT blood donor centre in Brixton, explained that the rare Ro blood subgroup is 10 times more prevalent in people with a black heritage background.

According to NHSBT, only 3% of regular donors have an Ro blood type, whereas 47% of black heritage donors have this blood type.

This is why, Mr Osei-Bonsu says, it is vital for more black heritage donors to come forward.

Angel mostly manages her condition with medication, but required a blood transfusion after a sickle cell crisis when she was younger

Kehinde also shared his own story of being diagnosed with the disease, after waking up in serious pain one night and initially thinking he had cancer.

"Over the years it has been hard to adjust and the condition has had a profound impact on my life," he said.

"Taking time off work to recover from the side effects has been challenging, and I have a lot of pain in my joints and also lost the sight in my left eye.

"Sickle cell is not well understood, and initially I didn't speak about it due to the stigma and 'being male'."

Kehinde has now been campaigning for over a decade to help people living with sickle cell.

He has launched his own charity, SickleKan, and works with NHSBT to raise awareness.

He said it was "inspiring" to "be able to pass the baton on to my daughter, and watch her talk about sickle cell openly".

"We hope this book helps families to learn more about sickle cell, and to understand how donating blood helps people."