Understanding Sickle Cell Disease: What You Need to Know

thelma.okunuga@blacksciensuscic.org

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:

Get stuck in small blood vessels, blocking blood flow

Break apart easily, causing anaemia (low blood count)

Don’t carry oxygen as well as healthy cells

Die much faster than normal cells (10-20 days instead of 120 days)

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:

1 in 76 babies born to Black Caribbean families has sickle cell disease

1 in 150 babies born to Black African families has sickle cell disease

It also affects people from Mediterranean, Middle Eastern, and Asian backgrounds, though less commonly

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:

Pain not being believed or taken seriously

Delays in treatment during crises

Inappropriate accusations of drug-seeking behaviour

Missed complications

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):

Sudden, severe pain that can last hours to weeks

Often in bones, chest, back, arms, legs, or abdomen

Can feel like being stabbed, crushed, or burned

May need hospital treatment and strong pain relief

Anaemia (feeling tired and weak):

Constant tiredness and low energy

Shortness of breath

Dizziness or feeling faint

Pale skin, lips, or nail beds (harder to see on darker skin—check inside lower eyelids)

Fast heartbeat

Swelling (especially in children):

Painful swelling in hands and feet (dactylitis)

Often one of the first signs in babies

Frequent infections:

The spleen (which fights infections) often becomes damaged

More susceptible to serious infections like pneumonia and meningitis

Fever should always be treated as urgent

Jaundice:

Yellowing of eyes and skin

Caused by breakdown of sickle cells

Delayed growth (in children):

Growing and developing more slowly than peers

Puberty may start later

Vision problems:

Damage to blood vessels in the eyes

Can lead to vision loss if not treated

Priapism (in males):

Painful, prolonged erection

Requires urgent medical attention

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:

Exaggerating symptoms

Seeking drugs

Regular attenders who don’t really need help

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

Early signs of complications

How quickly someone can deteriorate

Appropriate pain management protocols

The seriousness of certain symptoms

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

They’ve been treated badly before

They don’t want to be seen as a “frequent attender”

They’re trying to maintain normal life

They fear being accused of drug-seeking

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:

Understand whether you have sickle cell disease or sickle cell trait

Know your specific type (HbSS, HbSC, HbS beta-thalassaemia, etc.)

Keep a copy of your diagnosis letter

Register with a specialist centre:

You should be under a haematologist who specialises in sickle cell

Specialist centres provide better, more knowledgeable care

If you’re not registered, ask your GP for a referral

Have a personalised care plan:

This should detail your usual symptoms, pain management, and what helps you

Keep copies on your phone and at home

Share with A&E when you need emergency care

Update it regularly with your specialist

Manage day-to-day:

Stay hydrated: Drink 8-10 glasses of water daily—dehydration triggers crises

Keep warm: Cold can trigger crises—dress in layers, avoid sudden temperature changes

Avoid high altitudes: Flying is usually fine, but high mountains can trigger crises

Don’t overexert: Balance activity with rest

Take medication as prescribed:

Avoid smoking and limit alcohol

Family planning:

If you have sickle cell or trait, your partner should be tested

Genetic counselling is available to discuss risks

Prenatal testing is available if both parents carry the gene

Mental health support:

Living with chronic pain is exhausting and traumatic

Ask your GP or specialist about counselling or psychology support

Connect with peer support groups

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:

Regular appointments (usually every 3-12 months) with a haematologist

Annual health checks including eyes, heart, lungs, kidneys, liver

Blood tests to monitor your condition

Immunisations to prevent infections

Transition support from paediatric to adult services

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:

Severe pain that doesn’t improve with your usual pain medication

Fever of 38°C (100.4°F) or higher—this could be serious infection

Severe chest pain or difficulty breathing (acute chest syndrome)

Sudden severe headache or weakness on one side (possible stroke)

Sudden vision problems or loss of vision

Priapism (painful erection lasting more than 2 hours)

Severe abdominal pain and swelling

Extreme paleness or breathlessness (severe anaemia)

Seizures or loss of consciousness

Feeling confused or not acting normally

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

Community Resources & Support

Sickle Cell Society:

UK’s leading sickle cell charity

Advocacy, information, and support

Can help if you’re experiencing poor care

Website: sicklecellsociety.org

NHS Sickle Cell and Thalassaemia Screening Programme:

Information about screening and the condition

Resources for families

Specialist sickle cell centres:

Most major UK cities have specialist centres

Provide expert care and support groups

Ask your GP for referral if you’re not registered

Local support groups:

Many areas have peer support groups

Connect with others who understand

Share experiences and coping strategies

Mental health support:

Ask your specialist team about psychology or counselling services

Some sickle cell centres have dedicated mental health support

Your GP can refer you to NHS talking therapies

Online communities:

Social media groups connect people with sickle cell

Share experiences and advice

Reduce isolation

Young people’s groups:

Many centres run groups for children and teenagers

Transition support from paediatric to adult services

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:

Always tell your doctor about any herbs, supplements, or traditional remedies you’re using

Some can interact with sickle cell medications or affect blood clotting

Some may impact liver or kidney function (already vulnerable in sickle cell)

Never stop prescribed medication without talking to your specialist

Natural doesn’t always mean safe, especially with a complex condition

Hydration and nutrition:

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

Staying hydrated is crucial—some herbal teas can help, but water is essential

Folic acid-rich foods (dark leafy greens, beans) support red blood cell production

Iron-rich foods should be eaten in moderation—too much iron can be harmful

Ask for a dietitian referral if you’d like culturally appropriate dietary advice

Spiritual and faith practices:

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

If fasting for religious reasons (Ramadan, Lent, etc.), discuss with your specialist—adjustments can usually be made safely

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