What do you know about sickle cell and how can you support people with the condition? Speaking exclusively to Melan Magazine, Chief Executive, Sickle Cell Society John James OBE talks about what you should know about the illness.

Sickle cell is a condition that affects more than 7.5 million people globally with at least 80 percent of this figure being people from sub-Saharan Africa.

Within the UK, it is is now the fastest-growing genetic disease, affecting around 19,000 people — primarily from African and Caribbean backgrounds. Despite its prevalence, awareness and understanding of the condition remains low, both in public and in healthcare settings as we have written about previously.

Living with sickle cell: What you didn’t know about the disease

Chances are, you know someone who has the condition. Ahead of this year’s World Sickle Cell Day (19 June), we spoke to John James OBE, Chief Executive of Sickle Cell Society to shed light on some of the latest updates and treatments available. He also spoke on what support is available and how you can be an ally and help people who have the illness.

What do you wish more people understood about having sickle cell?

It is a serious, lifelong inherited blood disorder that can cause life-threatening complications and shorten lives. It is not simply an occasional pain condition.

People living with it can experience episodes of severe pain. One patient described a crisis as feeling like “a nail being hammered into my bones”. The condition can also cause organ damage, increase the risk of stroke, affect mental health and, in men and boys, lead to priapism – a painful prolonged erection that requires urgent medical attention.

Despite this, many people with the condition still face misunderstanding and stigma. Some have their pain questioned or underestimated, while others report being treated as though they are seeking drugs when they attend hospital for emergency care.

Having the condition can affect every aspect of life, including education, work, relationships, and wellbeing.

What does a crisis really involve?

Sickle cell changes the shape of red blood cells. Instead of being round and flexible, they can become hard and crescent shaped.

A crisis happens when these cells block blood vessels, reducing the supply of oxygen to tissues and organs. This can cause sudden, severe pain anywhere in the body.

For some people, the pain is so intense that they need emergency hospital treatment and strong pain relief. A crisis can last for hours, days or even longer.

One way to think about it is that a heart attack happens when a blood vessel supplying the heart becomes blocked. During a crisis, blood vessels can become blocked anywhere in the body, causing severe pain and potentially leading to serious complications, including organ damage and stroke.

What progress has been made in treatment options?

Progress has been made, but it has been slow in some respects.

Hydroxycarbamide (also known as hydroxyurea) has been used for more than 20 years and remains one of the most important treatments for reducing painful crises and hospital admissions. Blood transfusions and exchange transfusions also play a vital role for many patients. There have been new drug developments in the last 20 years, but they have subsequently been withdrawn from the NHS.

Sickle cell patients begin to receive first new drug for the disease in 20 years

The introduction of newborn screening has meant that babies can be diagnosed early and receive specialist care from the start of life. Better blood-matching processes have improved the safety of transfusions, and increased awareness of health inequalities has brought greater focus to improving standards of care. As a result, people with the condition are living longer than ever before.

What treatment options/progress has stalled?

Significant challenges remain.

Many people with sickle cell still experience delays in receiving pain relief and emergency treatment, despite NHS guidelines that recommend prompt care.

Access to specialist services can vary depending on where people live, and many of the improvements recommended following the landmark No One’s Listening report have yet to be fully delivered.

We also need continued investment in research. The sickle cell community has identified its top research priorities, helping to focus researchers on the areas that matter most to people living with the condition and their families.

Tell us about the new gene therapy treatment that was approved in 2025

Casgevy is a groundbreaking gene-editing treatment that aims to help the body produce higher levels of healthy foetal haemoglobin, which prevents red blood cells from becoming sickle-shaped.

In simple terms, doctors collect stem cells from a patient, edit the genes in a laboratory and then return them to the body. The goal is to dramatically reduce – or potentially eliminate – many of the symptoms and complications associated with the condition.

The treatment has been welcomed as a major breakthrough. However, it involves an intensive treatment process and is not suitable for everyone, so it should be seen as an important new option rather than a treatment available to all patients.

What are three things people can do to support those with sickle cell?

Learn about the condition. Understanding it helps challenge myths and misconceptions.

Believe people when they tell you they are in pain. The pain can be severe and may require urgent medical treatment.

How can you give sickle cell warriors the mental health support they need?

Consider becoming a blood donor. Many people with sickle cell rely on regular blood transfusions, and there is a particular need for more donors of Black heritage to help provide the best possible matches.

Is there anything else you’d like to share?

World Sickle Cell Day is an opportunity to celebrate the resilience, achievements and contributions of people living with sickle cell, while recognising that serious inequalities still exist.

This year we are shining a spotlight on young people and encouraging them to “Own Your Health” by accessing the support, information, and healthcare they need to live longer and live well with sickle cell.

Progress is being made, but there is still much more to do to ensure everyone with the condition receives timely, high-quality care and the opportunity to fulfil their ambitions.

Visit the Sickle Cell Society website to learn more about their work and to become a member.