Fast-growing illness affects hundreds in region - and causes strokes and organ failure if untreated
28.05.2023 - 10:47
/ manchestereveningnews.co.uk
Growing up, Tiffany Salako wasn't able to enjoy a normal childhood. She would regularly experience painful episodes, making it hard for her to breathe and walk.
As a baby, she had been diagnosed with Sickle Cell Disease (SCD), a genetic blood disorder thought to affect around 15,000 people in the UK, and which is more prevalent in people of Black heritage.
The serious and potentially life-threatening condition is the fastest growing genetic blood disorder, and can cause organ failure, strokes, loss of vision, and death.
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Tiffany, from Oldham, was rushed to hospital on many occasions as a child, after experiencing terrifying episodes known as "crises."
But she was unable to receive regular blood transfusions, which could have helped manage her condition, due to the risk of a dangerous build-up of iron in her blood.
Some patients with severe SCD require a complete blood transfusion, known as a red blood cell exchange (RCX), to remove the ’defective’ cells and replace them with healthy cells from donors using a machine.
At the age of 14, Tiffany was placed on the red blood cell exchange programme at Manchester Royal Infirmary and has some of her blood replaced by donor blood every six weeks - a treatment that doesn't carry the same risks to her iron levels.
Without it, she wouldn't be able to enjoy life as she does now. "The exchanges have made such a difference to my life. I’m so much more active now," said Tiffany, who is now 16.
"The pain of a crisis could be terrible. During the bad ones I felt I couldn’t breathe, it was so frightening. Now, after a blood exchange I feel good and any weakness is gone.
"I still get pain sometimes, but I