‘It’s like my bones are being squeezed though a vice': Sickle Cell Survivors plead for Black donors
Report by ITV Granada Reports journalist Lucille Brobbey
People living with Sickle Cell Disease across the North West are urging people of African- Caribbean heritage to donate blood.
Sickle Cell Disease is an inherited blood disorder that causes red blood cells in the body to be an unusual crescent shape. They also have a shorter lifespan compared to normal red blood cells.
Their shape means they don't move as smoothly through blood vessels and can actually block them and cause major problems. The condition mainly affects people of African and Caribbean descent.
Chantelle Hemmings diagnosed with Sickle Cell Disease at just 16 months old.
She said: “My Mum just thought I was a winey baby. But my joints would swell up, literally she couldn’t touch anywhere on my body because it was so tender and so sore.
“Before that, my Mum had no idea that she was a carrier so it was a bit of a shock to her.”
The disease has meant that for her entire life she always been in some level of pain.
Sickle Cell is also known as an invisible disability:
The condition caused one of Chantelle's major organs to shutdown.
Her renal failure began in 1995 with a steady decade long decline which resulted in her having a kidney transplant in 2015.
She added: “It's just meant a lot of kind of lifestyle choices I had to change which was quite difficult growing up with having friends around me of family around me that they were able to do things that I wasn't able to do.
"That was a really difficult thing mentally to have to adjust to.”
For Sickle Cell patients, ethnically matched blood is key because there are certain subgroups of blood that we need in order to transfuse.
Many sickle cell patients require rare blood subtypes such as Ro, the positive of Rh blood, which is more common in Black people, but not enough ethnic minority people are donating blood.
Colin Anderson, NHS Blood and Transplant Community and Engagement Lead
NHS Blood and Transplant Community and Engagement Lead Colin Anderson said: “Ro blood is really critical in maintaining good crossmatch.
"Black people, of African-Carribean descent, up to 50% of them have this subgroup. Wheres in our White counterparts, our European groups, that's about 2%.
“So you can see how the more people we get from our Black communities to actually donate blood is the more likely we are going to have ethnically best matched blood.”
Chantelle says blood transfusions are crucial to her survival as it means allows for blood to be able to constantly flow around her kidney which is incredibly important to prevent rejection.
Ray Stephen’s 18-year-old son has Sickle Cell and he says this inspires him to give blood regularly.
He said: “My son who is coming up to 19 is full sickle cell and I'm sickle cell trait. Which you can also give blood if you are sickle cell trait as well.
"But for me it's really personal because my son was for many many years on blood transfusions as well as progressing onto the blood exchange program.”
“The process is fairly simple. If for any reason you aren’t able to give blood, you will know before you come and give blood.
“It’s not just a case of them coming and just sticking a needle in your arm. They check your iron levels and you go through a health screening, a questionnaire and everything.”
After three decades a new drug called Crizanlizumab is set to be rolled out to 5,000 people over the next three years. It's expected to save people with Sickle Cell from excruciating pain.
CEO of Sickle Cell Care Manchester Anthony Mason said: “Crizanlizumab in terms of a new drug is a fantastic breakthrough. However, lets get this into balance, it's very crucial that blood is still given because this is not an absolute cure.
“However, giving blood is very crucial because outside of the 5,000 individuals, there are people outside of that group that will not.
“Therefore we have to balance it and recognise that this isn’t a cure. There are 10,000 people outside of the 5,000 who will still need blood being donated and other measures to be looked at in terms of assisting, helping and possibly looking at a cure for those living with Sickle Cell.”
Chantelle says blood transfusions are imperative to many Sickle Cell patients survival and would urge anybody that has an hour in their day to donate.
More information and resources on Sickle Cell:
Register to give blood online: