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Understanding Sickle Cell Disease: What You Need to Know 

Written by Nhima Sanha RGN

Reviewed by Thelma Okunuga MPHARM and Abimbola Ekundayo MRCGP

Sickle cell disease is an inherited blood condition that affects how red blood cells work. It mainly affects people of African, Caribbean, Middle Eastern, Mediterranean, and South Asian heritage. The condition causes red blood cells to become hard and crescent-shaped instead of round and flexible, leading to pain, anaemia, and serious complications. This article explains what sickle cell is, why awareness matters, and how to get the best care and support. 

What This Condition Is 

Your blood contains millions of red blood cells that carry oxygen around your body. Normally, these cells are round and flexible, like soft cushions that can squeeze through even the tiniest blood vessels. 

With sickle cell disease, these cells become hard, sticky, and shaped like a crescent moon (or a farmer’s sickle tool—that’s where the name comes from). These sickle-shaped cells: 

When sickle cells block blood vessels, it stops oxygen reaching that part of your body. This causes sudden, severe pain called a sickle cell crisis or pain crisis. It can happen anywhere—bones, chest, abdomen, joints. 

Sickle cell is inherited—you’re born with it. You get it when both parents pass on the sickle cell gene. If you inherit the gene from only one parent, you have sickle cell trait (you’re a carrier but don’t have the disease). 

There’s currently no cure for most people, but treatments help manage symptoms and prevent complications. Some people may be eligible for a bone marrow or stem cell transplant, which can cure the disease. 

Why It Matters for Black & Minority Communities 

Sickle cell disease predominantly affects Black communities, particularly people of African and Caribbean heritage. In the UK: 

Despite affecting thousands of people in the UK, sickle cell disease faces serious challenges: 

Lack of awareness and research funding: Compared to other genetic conditions affecting similar numbers of people, sickle cell receives far less research funding and public awareness. This is widely recognised as a form of health inequality. 

Healthcare knowledge gaps: Many healthcare professionals, including some GPs and A&E staff, have limited training on sickle cell. This can lead to: 

Systemic racism in pain management: Studies show that Black patients in pain are less likely to receive adequate pain relief than white patients. People with sickle cell often report being treated with suspicion when seeking help for severe pain. 

Stereotyping and stigma: Young Black men with sickle cell particularly face discrimination—being viewed as drug-seekers or troublemakers when experiencing genuine medical crises. 

School and work understanding: Many teachers and employers don’t understand the condition, leading to people being accused of faking illness or being lazy when managing a serious chronic condition. 

Mental health impact: Living with chronic pain, repeated hospitalisations, and discrimination takes a serious toll on mental health, yet mental health support for people with sickle cell is often inadequate. 

These aren’t minor issues—they directly affect health outcomes and quality of life. Understanding this helps you advocate for yourself and others. 

Common Signs & Symptoms 

Sickle cell affects people differently. Some have severe symptoms; others have milder experiences. Common symptoms include: 

Pain crises (most common): 

Anaemia (feeling tired and weak): 

Swelling (especially in children): 

Frequent infections: 

Jaundice: 

Delayed growth (in children): 

Vision problems: 

Priapism (in males): 

Symptoms often start before age one, but some people aren’t diagnosed until later. 

Why It’s Often Missed or Mismanaged 

Newborn screening catches most cases: Since 2006, all babies in England are screened for sickle cell at birth. However, issues still occur: 

People born before screening started: If you were born before 2006 (or outside the UK), you might not know you have it, especially if you have milder symptoms. 

Sickle cell trait confusion: Some people with trait (carriers) think they have the disease, or vice versa. Trait rarely causes symptoms but is important for family planning. 

Pain not believed: This is the biggest problem. Because pain is invisible and sickle cell crises can happen frequently, some healthcare staff wrongly assume people are: 

Lack of specialist knowledge: Outside specialist centres, many doctors and nurses have limited experience with sickle cell. They may not recognise: 

Normalising symptoms: People with sickle cell sometimes downplay their pain or avoid seeking help because: 

Mental health symptoms overlooked: Depression, anxiety, and trauma from repeated painful crises and medical experiences often go unrecognised and untreated. 

Communication barriers: When explaining your condition to new doctors, you shouldn’t have to—but often you do. Carrying a care plan helps but shouldn’t be necessary. 

What You Can Do 

Know your diagnosis: 

Register with a specialist centre: 

Have a personalised care plan: 

Manage day-to-day: 

Family planning: 

Mental health support: 

Get support: You’re not alone. Family, friends, and sickle cell organisations can provide practical and emotional support. 

What Good Care Should Look Like 

You deserve high-quality, respectful care. This means: 

Specialist care: 

Myths vs Facts 

Myth: “Sickle cell only affects Black people.” 
Fact: It mainly affects people of African and Caribbean heritage, but also affects Mediterranean, Middle Eastern, and Asian communities. 

Myth: “People with sickle cell are drug addicts seeking pain medication.” 
Fact: This is a harmful, racist stereotype. Pain crises cause genuine, severe pain requiring strong medication. 

Myth: “Sickle cell trait is the same as sickle cell disease.” 
Fact: Trait means you’re a carrier. You don’t have the disease and rarely have symptoms, but can pass the gene to children. 

Myth: “You can catch sickle cell from someone.” 
Fact: It’s genetic—you’re born with it. You cannot catch it or develop it later in life. 

Myth: “People with sickle cell can’t live normal lives.” 
Fact: With good care, many people work, have families, and live fulfilling lives. It’s challenging, but manageable. 

Myth: “Sickle cell is a childhood disease.” 
Fact: It’s lifelong. More people than ever are living into their 50s, 60s, and beyond with proper care. 

Myth: “There’s nothing that can be done.” 
Fact: Treatments are improving. Medications can reduce crises, blood transfusions help some people, and bone marrow transplants can cure it in some cases. 

Myth: “If you’re in pain a lot, you must be doing something wrong.” 
Fact: Sickle cell is unpredictable. You can do everything right and still have frequent crises. 

When to Seek Urgent Help 

Call 999 or go straight to A&E if: 

Take your care plan to hospital and be clear about your diagnosis.  

Community Resources & Support 

Sickle Cell Society: 

NHS Sickle Cell and Thalassaemia Screening Programme: 

Specialist sickle cell centres: 

Local support groups: 

Mental health support: 

Online communities: 

Young people’s groups: 

Religious, Cultural & Traditional Medicines 

Sickle cell has deep roots in African, Caribbean, Middle Eastern, and Asian communities, and many families have traditional approaches to health and wellbeing. 

Traditional and herbal remedies: 

Some people use traditional medicines alongside medical treatment. This is understandable, especially when modern medicine hasn’t always served our communities well. 

Important considerations: 

Hydration and nutrition: 

Many traditional diets are excellent for general health—rich in vegetables, legumes, and whole foods. For sickle cell: 

Spiritual and faith practices: 

Prayer, faith healing, and spiritual support are deeply important to many people and can provide comfort, hope, and community. 

Your culture, your faith, and your health can coexist. Good care honors all parts of who you are. 

Final Takeaway 

Sickle cell disease is serious, lifelong, and challenging—but you are not defined by it. With specialist care, self-management, and support, many people live full, meaningful lives. 

This information is for general awareness. It doesn’t replace personalised medical advice. Always speak to a healthcare professional about your individual situation. 

References for Sickle Cell Disease Article 

UK National Health Service (NHS) Sources 

  1. NHS – Sickle Cell Disease Overview 
  1. NHS Sickle Cell and Thalassaemia Screening Programme 
  1. NHS England – Sickle Cell Disease in Pregnancy 

National Institute for Health and Care Excellence (NICE) 

  1. NICE Clinical Guideline [NG59] – Sickle Cell Disease: Managing Acute Painful Episodes (2012, updated 2016) 
  1. NICE Quality Standard [QS58] – Sickle Cell Disease (2014) 

Sickle Cell Society (UK) 

  1. Sickle Cell Society – Main Website 
  1. Sickle Cell Society – Standards for Clinical Care of Adults with Sickle Cell Disease in the UK (2018) 

Public Health England / UK Health Security Agency 

Health Inequalities and Racism in Healthcare 

  1. NHS Race and Health Observatory Reports 
  1. Sickle Cell Society – “No One’s Listening” Report (2021) 
  1. UK Parliament – Sickle Cell and the Fight Against Health Inequalities 

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