'My disease puts my life at risk but I don't receive the healthcare I deserve'

Those living with have spoken about living with the painful condition that is often overlooked, underrepresented and deeply misunderstood. In a new mini-documentary, , content creator Charlotte Gosling delves into the heartbreaking effects of the incurable disease by speaking to those directly affected.

Inspired by the lack of awareness, Charlotte set out to tell the stories many don’t get to hear. Travelling across , she spoke to individuals who intimately understand the emotional and physical toll of living with, allowing them to provide first-hand accounts of their harrowing reality.

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For Charlotte, this was more than a documentary. It was a personal mission, born out of frustration that even in 2025, so few people truly understand what the disease is or how it affects lives. Despite being the fastest-growing genetic disorder, it continues to receive disproportionately little attention, considering it affects thousands, primarily affecting people from Black African and Caribbean backgrounds.

The lack of awareness has real consequences, from delayed diagnoses to medical mistreatment and neglect when they seek help. “My life’s on the line, and to not feel comforted when you're struggling so severely, can be heartbreaking,” Mariam Nyarko, one of the powerful voices featured in the documentary, said.

Sickle cell disease causes red blood cells to form in a rigid sickle shape, rather than the normal round shape. This abnormality can lead to blockages in blood flow, causing agonising pain, damaged organs and in severe cases, life-threatening complications.

The most common symptom is sickle cell crisis, where pain can occur all over the body, particularly in the chest, arms and legs. These episodes can last for days or even weeks, often requiring urgent hospital treatment. In severe cases, the disease can lead to blindness, strokes or even death.

Crises can be triggered by a variety of factors including dehydration, extreme temperatures and stress. On her journey to learn more about the disease, Charlotte spoke to Miriam Nyarko, who explained that grieving her father led to regular crises.

But it’s not just the physical symptoms which affect people with sickle cell - it’s the emotional weight too. Many carry the pain quietly, feeling like a burden to those around them. "I always used to see my health as an inconvenience to other people,” said Nikki Fagbemi in the documentary, where she opens up about living with Sickle Cell beyond the pain. “I was like I'm stressing my mum, stressing my family.”

Charlotte also spoke to Alvin Ikenwe, who starred in Rapman's Supercell - a powerful film raising awareness about Sickle Cell in a unique way. In the film, characters gain powers as a result of a sickle cell mutation, using fantasy he explored the real life challenges of the condition. For Alvin, landing the role felt like a beautiful coincidence, as he suffers from the disease.

"Will you be able to manage? Won't it be tough on you?" are the kinds of questions Anthony Okereke is used to hearing - especially when he wanted to get in the politics industry. While this might sound like common questions, in his case, they were rooted in doubt over whether he was capable because of his condition.

For those most severely affected, blood exchange is a lifeline. This is where a patient’s blood is partly removed and replaced with donated blood, the procedure is regularly, often just weeks apart. For patients less severely affected, a blood transfusion may be given, injecting blood from healthy donors, helping to manage symptoms.

After learning more about the treatment and just how vital donated blood is for those living with, Charlotte knew she had to act. “I realised when going on this journey and speaking to everyone I met - it wasn't enough, I had to do more and that's why I decided to donate blood", she reflected, as seen in the documentary.

The film also explores wider conversations from personal experiences with claims of medical neglect, under-resourcing and the emotional toll of navigating an underfunded healthcare system. A new £1.6million gene-editing treatment, Exagamglogene autotemcel, was approved for use on the in January. It has been designed for those who are eligible for a transplant but lack a matched donor, and has been dubbed a potential 'cure.'

While it is certainly a breakthrough, it is not one widely accessible, with the one-time treatment given to around 50 people a year in the UK. It involves modifying a patient’s blood in a lab, reprogramming them to produce high levels of foetal haemoglobin through blood cells. The recipient undergoes high-dose chemotherapy to remove faulty cells from the bone marrow before the cells are transplanted back.

The documentary was created to give a voice to experiences that are rarely shown in the mainstream media, which is why we at the knew we had to help spread much-needed awareness, with the aim of educating and empowering.

A Blood Crisis - Inside the lives of people living with sickle cell disease is available to watch. To truly make a difference, sign up to donate blood .

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