'It's an everyday fight': Author creates children's books to highlight inherited blood condition

An author from Birmingham has created a children's book to promote greater awareness of sickle cell disease

An author who has sickle cell disease has told ITV News Central "it's an everyday fight" for people who live with the condition.

Jenica Leah, who has spoken of the need for greater awareness of the condition, said: "It's not just a day or a month, it's 365 days of pain and complications."

Ms Leah, who's from Birmingham, has written a series of children's books to educate others about the invisible illness. 

She hopes her children’s literature can help create greater understanding for the next generation.

'It's 365 days of pain and complications', an author describes what it is like to have sickle cell disease

Ms Leah said: "I wanted to create something that I felt like I needed at the time when I was growing up.

"So throughout my childhood I knew I had sickle cell but I didn't really know what it was so I found it difficult to explain to people what was happening to me - and why I was missing school a lot to go into hospital."

She added: "It's not even just about children that live with the condition, it's also about their friends, their loved ones - people around them who can also advocate for them.

"You can't help someone when you don't know what they are going through. 

"People that live with this condition it's an everyday fight. It's not just a day or a month, it's 365 days of pain and complications."

Sickle cell disease is an inherited blood disorder Credit: ITV News Graphics

What is sickle cell disease?

Sickle cell disease – which is particularly common in people with an African or Caribbean background – is an inherited and lifelong health condition causing severe pain and organ failure often requiring hospital admission.Jenica hopes the news of the first new sickle-cell drug in 20 years will be life-changing for thousands like her. What's the new drug to treat it?

The new life-changing drug, known as Crizanlizumab, will be delivered by a transfusion drip and works by binding to a protein in the blood cells to prevent the restriction of blood and oxygen supply.

It is the first treatment for the disease in the past 20 years and will help as many as 5,000 people over the next three years in England. Sickle cell disease affects around 15,000 people in the UK and it’s nationally recognised that Birmingham has the highest concentration of haemoglobin disorders (sickle cell anaemia and thalassaemia) outside of London.

The new drug will reduce the number of times a sickle sell patient needs to go to A&E by two fifths, the NHS said.People aged over 16 who suffer from multiple sickle cell crises every year will be eligible for the treatment.