'Sickle cell isn't just on Supacell': Konnor Ewudzi and his family open up about their experience on World Sickle Cell Day

“The series did an amazing job of highlighting the condition to the public, but there is so much more people need to know.”

Sickle Cell Disorder is a genetic condition which affects the red blood cells – where they develop into a crescent shape, this can cause blockages of the blood vessels leading to pain and potential organ damage.

For someone to be born with Sickle Cell, two parents carrying the ‘trait’ have to come together. This is why testing is so important.

Konnor's family are very close

“For me, I am on one of the lucky ones. My dad (Godfrey) carries the trait, so does my sister Billie-May. My mum Siobhan is mixed race, and she didn’t carry the trait, which is why I am so fortunate.

"But my auntie Freda, uncle Richard and late cousin Alexander, were not so lucky. They suffered terribly growing up, with hospital visits and blood transfusions required to help them with their pain and suffering.”

The Rugby Presenter and Love Island star gently gathered family members on Monday, June 16 at the Abbey Wood estate to capture these special images, designed to show how big the impact of Sickle Cell can be on just one family.

“My cousin, Alexander was born with sickle cell. He died at just 28, out of the blue. He had just graduated from Cambridge University as an architect. He was not sick or suffering any long term illnesses – his organs just gave up one day.

The Ewudzi's on the steps of the Netflix hit series SUPACELL which focuses on the condition

"It is so sad that this can rob us of such beautiful lives at such young ages. Testing is so key. And blood giving even more so.”

“It is definitely something I have to think about when I meet a new partner,” Konnor’s sister Billie-May said. “Like it is on my mind when I start dating someone new – I don’t talk about it much but it is really important young people are aware of it."

“Seeing the way it has affected Freda, my brother Richard and the sad loss of my late nephew, Alexander, is just heartbreaking. We just want to help more people avoid what we went through if possible,” said Godfrey.

“We had Billie-May and Konnor tested when they were really little. It was a nerve-racking time, but it had to be done. We are the lucky ones," agreed Siobhan, Konnor’s mum.

Konnor and his family headed to the Abbey Wood Estate where SUPACELL was filmed

The national campaign for awareness this year is called ‘TELL IT LOUD’ – asking all those with Sickle Cell or the trait to share their experiences and help educate the nation on this largely misunderstood condition.

“This affects over eighteen thousand people in the UK – we urge those who may not know their genotype to get tested before family planning.” Rachel Simpson, Communications Officer & SEL Lead Mentor for Sickle Cell Society said.

“What we really need more than anything is for people to give more blood. Blood transfusions are the main treatment process for people with the disorder, and many don’t know that people with the trait can give blood. It’s so important to donate if you can.”

Konnor continued: “One blood unit or donation which takes 20 mins can help up to three patients – so it really is an incredibly easy way to help Sickle Cell sufferers. There are blood donation centres all over the UK so we are hoping the numbers go up after sharing our personal stories.”

Love Island's Konnor Ewudzi and family have shared their personal stories on Sickle Cell Disorder

John James OBE, Chief Executive of the Sickle Cell Society said: “Sickle cell disorder is the UK’s fastest growing genetic condition, but people living with it still face too much silence and too little support. That’s why we’re asking people to ‘Tell It Loud’ this World Sickle Cell Day — by sharing their story, giving blood, and getting MPs to support better employment rights for people living with the condition.

We’re so grateful to Konnor for sharing his story and helping us shine a light on sickle cell and the urgent need for more action, more awareness and more black heritage blood donors.”

For more information on Sickle Cell please head to www.sicklecellsociety.org