Former Coronation Street star Victoria Ekanoye calls for more research into Sickle Cell disease

ITV News

2 days ago

ITV Granada Reports entertainment correspondent Caroline Whitmore has been catching up with Victoria Ekanoye who lives with Sickle Cell disease.
A former Coronation Street star who lives with Sickle Cell disease says research into the UK's biggest genetic blood disorder would be further ahead if it was not seen as a "black disease".
Around 15,000 people live with the incurable condition which mostly affects those from African and Caribbean backgrounds. But Victoria Ekanoye says it can affect anyone of any ethnicity.
The 43-year-old says she was "very quiet" about her own diagnosis when she was a younger woman but "shouts it from the rooftops" now because "we need the visibility".
"People say that Sickle Cell is a black disease but it really isn't," she added. "Any single person can have the Sickle Cell gene. It developed as a mutation gene as a defence mechanism against malaria.
"It may be controversial to say but if it wasn't a specific demographic that mainly struggled with this condition then we would be a lot further ahead in treatment."
The mum-of-one, who starred in the ITV soap for three years, was diagnosed with Sickle Cell in her 20s and says she often experiences painful episodes and exhaustion.
"My mum is a carrier, my father passed away from it and now my son is a carrier," she said. "I'm always tired, especially being a mum, but the main thing I experience is the Sickle Cell crises.
"Something has happened along the way to cause my blood to not flow correctly and, when it does get clogged up in the veins, it can cause excruciating pain."
Victoria, who is originally from Bury, supports the charity Sickle Cell Care Manchester which has just celebrated its 10th anniversary with a fundraising ball in Worsely, Salford.
She said: "It has blown me away the amount of blood, sweat and tears of getting to 10 years. We asked everyone to wear read and everybody showed up. It was beautiful."
What is Sickle Cell disease?
It is a group of inherited conditions that affect the red blood cells and can cause pain, infection and in severe cases it can be life-threatening. The most serious type is called sickle cell anaemia.
People with sickle cell disease produce unusually shaped red blood cells that can cause problems because they do not live as long as healthy blood cells and can block blood vessels.
It is a life-long disease and particularly common in people with an African or Caribbean family background.
What are the symptoms of Sickle Cell disease?
According to the NHS, people born with the blood disease tend to have problems from early childhood, although some children have few symptoms and lead normal lives most of the time.
The main symptoms are:
Episodes of pain known as sickle cell crises are one of the most common and distressing symptoms of sickle cell disease.
More vulnerable to infections, particularly when young.
Nearly all people with the disease have anaemia, where the haemoglobin in the blood is low.
Some people also experience other problems, such as delayed growth, strokes and lung problems.