Fast-growing illness affects hundreds in region

Fast-growing illness affects hundreds in region - and causes strokes and organ failure if untreated

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.

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 haven’t suffered a crisis or been admitted to hospital since. I can lead a normal life. I had never really thought about blood donors before, but now I know the difference they make to people like me. I’m grateful to everyone who gives blood."

And now, thanks to a new service between NHS Blood and Transplant (NHSBT) and Manchester University NHS Foundation Trust (MFT), people living in the North West with SCD can use an emergency service which provides red blood cell transfusions 24/7.

Patients are also now able to receive treatment at a hospital close to them without the need to travel to Manchester regularly or in an emergency.

There are over 615 people being treated for SCD at hospitals across the North West who are now benefitting from the new service.

Dr Joseph Sharif, Consultant Haematologist at MFT, said: "We are delighted to partner with NHSBT to establish a 24/7 emergency automated red cell exchange service across the region.

"Sickle Cell Disease is a serious condition, and people with SCD are at risk of serious complications and can become extremely unwell without treatment, but most hospitals do not have the facilities to offer this.

"This new service agreement and referral pathway ensures that patients can now access this vital emergency treatment at a hospital close to them across the North West."

With the rising number of Sickle Cell Disease cases across the country, the need for regular blood donors, especially people of Black heritage, is also increasing.

Teresa Baines, TAS Nursing Head and Deputy Chief Nurse from NHS Blood and Transplant said: "This programme would not be possible without the generosity of people who give blood.

"The NHS always needs new donors, and we especially need more donors of Black heritage to help sickle cell patients like Tiffany who need ethnically matched blood. I’d encourage anybody who is able to give blood to come forward and help save lives."

If you’d like to become a blood donor you can register today and book an appointment by visiting blood.co.uk, downloading the GiveBloodNHS app or calling 0300 123 23 23.

READ NEXT:

Read news from 100’s of titles, curated specifically for you.

Already a member? Sign in here