Sickle cell is not rare — it is ignored

There is a word that has followed sickle cell disease for far too long: “rare.” But when you look at the number of people affected by sickle cell disease (SCD), particularly across Africa, you have to ask: rare to whom?

For millions of families around the world, sickle cell is not an obscure condition tucked away in a medical textbook. It is part of everyday life. It is the child who wakes in the night crying because pain has gripped their body. It is the teenager missing school again because they are in hospital. It is the adult trying to explain to an employer why exhaustion can remain long after a crisis has ended.

And it is the parent sitting beside a hospital bed wondering when their child will be well enough to go home. Sickle cell is not rare in those homes. It is real, relentless and sometimes devastating.

Nigeria and the weight of Sickle Cell: Nigeria carries an enormous burden of sickle cell disease. Yet the condition does not always receive attention proportionate to the number of lives it touches.

This is one of the contradictions that has troubled me throughout my years of writing about SCD. How can a disease affect so many families and still struggle for visibility?

Part of the answer may lie in where the greatest burden falls. Sickle cell disproportionately affects people with ancestry from sub-Saharan Africa, although it is also found among people from the Mediterranean, Middle East, India and other regions.

Diseases do not exist outside society. Who is affected, where they live, their economic circumstances and the political priority given to their health can influence how urgently a condition is treated.

That is why we need to move beyond simply describing sickle cell as a medical condition. It is also a question of health inequality.

I know this Disease personally: For me, this discussion can never be purely academic. I have lived with sickle cell disease all my life.

I know what pain feels like when it takes over your body. I know about hospital admissions, fatigue and the disruption that chronic illness can bring to plans that other people take for granted.

But I also know something else. Living in the United Kingdom means that I have access to specialist healthcare that many people living with SCD elsewhere may struggle to obtain or afford. When I need specialist monitoring or treatment, there is an established healthcare system around me.

That does not make living with SCD easy. But access matters. Geography matters. Money matters. The country in which a person happens to be born should not determine whether they have a reasonable chance of surviving and living well with a genetic condition. Yet too often, it does.

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More than a pain crisis: One of the reasons sickle cell can remain misunderstood is that people often associate it solely with episodes of severe pain. Pain crises are certainly one of its most recognised features, but SCD can affect almost every part of the body.

It can be associated with anaemia, infections, acute chest syndrome, organ damage, eye complications, bone problems and stroke. The cumulative burden can be enormous.

There is also the psychological burden. Imagine living knowing that severe pain can arrive unexpectedly. Imagine planning work, school, travel, relationships and family life around a body that may suddenly force you to stop. Then imagine repeatedly having to prove that your pain is real. Many people living with SCD know that experience.

The visibility problem: Visibility changes things. When the public understands a disease, conversations change. When decision-makers understand its scale, priorities can change. When researchers receive adequate support, treatments can change.

And when patients feel seen, their experiences can change too. This is why awareness cannot be confined to one month of the year. We need sustained conversations about sickle cell disease in schools, universities, workplaces, hospitals, churches, mosques and communities.

We need young people to understand genotype before they make decisions about relationships and parenthood, without turning genetic information into stigma or judgement.

We need healthcare professionals who understand sickle cell pain and listen when patients describe what is happening in their own bodies. And we need people living with SCD represented not merely as patients but as professionals, parents, academics, entrepreneurs, artists, leaders and people with aspirations beyond their diagnosis.

What does “rare” really mean? Sometimes rarity is not only about numbers. There is another kind of rarity: being rarely discussed. Rarely researched. Rarely funded adequately. Rarely represented. Rarely placed near the top of the agenda.

A condition can affect an enormous number of people and still become socially invisible when those people have insufficient power to command attention. That is the uncomfortable conversation we need to have about sickle cell disease.

The question is no longer simply, “How many people have SCD?” We must also ask: Who is paying attention? Who is investing? Who is researching? Who is listening to patients? And who is being left behind?

Sickle cell disease has been present in families for generations. People living with it should not still have to fight simply to make the world understand that their disease matters. Sickle cell is not rare. Perhaps what has been rare is the sustained attention, investment and urgency that people living with it deserve.

If you would like to get in touch with me about Sickle cell, do so via my email address: [email protected].  And do checkout my blog:     https://www.dailylivingwithsicklecell.com/ My book on Sickle Cell – HOW TO LIVE WITH SICKLE CELL and my other books are available for purchase on www.amazon.com.