6 days Ago By [email protected] (Shannon Miller, Katie Oborn)
An NHS worker who temporarily lost his eyesight due to a painful blood disease has welcomed news of a new treatment - but says it won't work for everyone. Sickle cell disease, characterised by the abnormal sickle shape of red blood cells instead of the typical round form, is the UK's most rapidly expanding genetic disorder. This deformation causes excruciating blockages that can inflict organ damage, potentially leading to blindness or life-threatening strokes.
People living with sickle cell disease often endure relentless pain and constant worry, yet a significant advancement has now offered a glimmer of hope for the approximately 17,500 UK sufferers. A revolutionary £1.6 million gene-editing therapy will soon be available to those most severely impacted in an attempt to achieve a 'functional cure'.
As of January 31, the NHS greenlighted exagamglogene autotemcel for use in patients eligible for stem cell transplants who lack matching donors. Designed as a one-off procedure, it will be administered to about 50 UK residents annually. It works by altering the patient’s own blood stem cells in a laboratory to reprogram them to produce elevated levels of foetal haemoglobin, reports .
Prior to having these modified cells transplanted back into them, recipients will undergo intensive chemotherapy to eradicate faulty bone marrow cells. However, Calvin Campbell, an NHS employee from London who has lived with sickle cell disease for 60 years, voiced concerns about the treatment's reach, indicating it might not be the universal solution some anticipated. "People start to believe I'm not going to have to go through this anymore and they're told sorry, you're not even going to be considered," he highlighted.
"People need to stop using the word cure. The vast majority of people with sickle cell won't be affected by it, you have to be unwell but not too unwell. But for the people who are eligible, it will most definitely help.
" The 60-year-old has been suffering since he was six months old - and he describes the harrowing condition akin to someone "taking a baseball bat, smashing and breaking every single bone in my body then forcing me to run a marathon as they continue to beat me" These episodes of excruciating pain are known as a 'crisis' and can be triggered by factors ranging from weather changes to stress and dehydration, often causing pain that persists for days or even weeks, typically necessitating hospital treatment which includes the use of opioids. Describing a chest crisis, Calvin said it is similar but more extreme and "feels like a hot jagged knife has been jammed through the centre of my chest out of my back". Calvin is a senior community engagement officer for NHS Blood and Transplant (NHSBT), whose role is to specifically get Black and Brown communities to donate blood and organs.
He also sings a choir called B Positive, made up of people whose lives are affected by sickle cell, created by the NHS to spread awareness and bring people together. In his childhood Calvin also endured the agonising effects of severe sickle cell leg ulcers. The condition was so debilitating that he lost all the skin and most of the flesh from below his knees down to the soles of his feet.
Reflecting on those harrowing times, he recalled: "You could have put your arm through the space in my leg, the doctor described my pain as akin to being set on fire," adding, "And that wasn't the worst, I ended up paralysed for a couple of years. No one has ever explained why." Another heart-wrenching ordeal occurred when Calvin's brother passed away at a tragically young age.
Upon receiving wreaths at his door, he discovered, to his shock, that they bore his own name - mourners had assumed that Calvin had died, because he was always so unwell. Today, Calvin's routine includes monthly blood exchanges, a treatment that has allowed him to travel for leisure recently- a first for him. He described the crucial support he requires, which takes "roughly 128 to 132 people a year" to keep him alive - adding that this shows "how big the need is".
His dedicated consultant haematologist, Dr Emma Draser, remarked on the vast improvement in her patient's quality of life: "What stands out about Calvin is his persistence and determination to succeed despite his severe sickle cell disorder and its acute and long term impacts on his health. "Calvin is always on the go. He is able to travel now, has an active family life with his grandchildren and extended family, not to mention the work he does for the NHSBT, our local patient support group and our network patient public voice group.
I am always telling him to slow down." Regarding the new therapy, she expressed optimism, in that the new gene therapy gives hope. Even though it isn't appropriate for all people with sickle cell disorder, it "increases choice".
New trial medications will continue to be licensed - and give people options for "improved outcomes in sickle cell disorder". Currently, many patients like Calvin depend on frequent transfusions, yet finding a compatible match is challenging, often leading to extended intervals between exchanges or the administration of fewer blood units. One donor making a significant impact is Amino Ali, a renal nurse with the RO blood type - the most suitable match for those with sickle cell, which minimises the risk of negative reactions.
Amino, 29, from Oxford, discovered her rare blood type following her initial donation and said she felt "really special" when she was told, especially knowing that one donation "could save up to three lives". Amino said: "It's just a small gesture to do something greater. I've been encouraging my family and my friends and two of my friends have started donating blood and my siblings.
I know that there are misconceptions that exist around donating blood, especially in the Black community, I do want to try and break the misconceptions because you are essentially helping out your own community and you're not losing anything by donating." The Mirror recently visited the new Brixton Donation Centre, a pivotal development for boosting Black blood donors, as Lambeth boasts one of the most significant Black demographics in London. It's noted that some 55 percent of Black individuals in London possess the RO blood type, while just 2 percent of people from other ethnic groups share this type.
Upon arriving in the centre's reception area, visitors are greeted by the inspiring 'hero wall' showcasing donors. The venue is designed to provide an enjoyable experience, from comfortable seating for donations to tempting local treats mirroring the essence of the community, such as rum cake. As of January 2025, nearly 33 percent of all RO blood donations across England and Wales were sourced from south London donor hubs, spotlighting the importance of this specific site in raising numbers among Black blood donors.
Marikany Keita, 20, made his first donation at the centre after witnessing his friends grapple with illness. Marikany said: "I want to help, I see it everywhere and know by donating my blood it will help people. I saw this (Brixton Donation Centre) last week and I booked it the exact same day.
If I didn't see this I wouldn't have been here today. No way." Sickle cell disease affects the shape of red blood cells, causing them to form into a sickle or crescent shape.
This abnormal shape leads to the cells getting jammed in blood vessels, which can result in severe pain or even cause deadly long-term complications, such as organ failure and strokes. Predominantly found in individuals of African or Caribbean heritage, sickle cell disease is among the fastest-growing genetic disorders in the UK, compelling many patients to undergo regular blood transfusions for survival. Symptoms can begin as early as six months old.
The NHS lists the most common symptoms as painful episodes, susceptibility to infections, and anaemia. Gene therapy, blood exchanges and transfusions, hydroxycarbamide (also known as hydroxyurea), along with stem cell or bone marrow transplants, are some of the treatments available. The demand for blood donations for sickle cell treatment has surged by 67% in the last half-decade.
The NHS is making an appeal for more Black blood donors to step forward. In the UK, cases are on a sharp rise, with the demand for blood donations to treat the condition having surged by 52% in the past five years. The condition primarily impacts African and Caribbean communities, but it can affect anyone.
For information about your nearest centre and how you can contribute, visit.
