On sickle cell habitus, the physical symptoms of severe cases

Sickle cell habitus, the distinct physical features of some people with sickle cell disease, are typically associated with patients who have more severe forms of the disease, such as sickle cell anemia. But the severity of sickle cell disease can vary greatly from one patient to another because of a range of factors. Not all sickle cell patients will have the same physical features.

In Nigeria, where I live, the public widely recognizes some of these features, which automatically stigmatize the people who have them; these patients, often called “sicklers,” are often thought to have a short life expectancy. Many people hold this misconception, including some health professionals who believe they can identify every sickle cell patient based on physical appearance. Contrary to what they and others think, sickle cell habitus isn’t generalized, and with medical advances, many sickle cell disease patients are growing up without these features.

In my childhood, my sickle cell diagnosis was known only to my parents and whomever they disclosed it to, because the characteristics of my habitus weren’t apparent. Few people knew, let alone stigmatized me. Only my adult complications, which limited my movement, eventually gave my diagnosis away. But when I was a child, every doctor I saw told me I didn’t look like a typical person living with sickle cell.

Today, as a medical professional myself, I want to acknowledge that I’ve always had some physical features of sickle cell.

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Examples of my habitus

Jaundice is a common habitus and sickle cell symptom, and I experienced it frequently as a child. I stopped having jaundice that often as an adult, however, possibly because I took better care of myself. Another habitus I’ve always possessed is pallor. Sickle cell disease causes paleness of the eye’s mucus membrane, the palms, and the plantar surface of the feet because of chronic anemia.

I also have slender arms and legs, another commonly known habitus in sickle cell patients. That’s because our bodies aren’t properly supplied with blood, oxygen, and nutrients to grow as they should.

During my early childhood, I exhibited two other characteristics of sickle cell habitus: a protruding abdomen and leg ulcers. A protruding abdomen can occur in children and adults with sickle cell disease and is often associated with hepatomegaly (an enlarged liver), splenomegaly (an enlarged spleen), abdominal and splenic sequestration crisis (when excessive blood is trapped in the abdomen or spleen), constipation, and other features.

Leg ulcers are a common sickle cell complication resulting from impaired blood flow. Venous insufficiency and other factors can also influence them.

Delayed puberty is also a habitus I experienced, with my breast development starting at age 14. Sickle patients can also be underweight, slim, and short. I’ve always weighed less than 50 kilograms (about 110 pounds), and although I’m short, I inherited that from my dad. Since I’m taller than my AA sister, I attribute my shortness to genetics rather than sickle cell.

I didn’t develop any other sickle cell habitus characteristics until I was an adult, when I gained bone deformities and disabilities. Other physical characteristics of sickle cell that I don’t possess include frontal bossing of the skull (an unusually prominent forehead), gnathopathy (overriding of maxillary bone over the jawbone), barrel chest, stunted growth, scoliosis, and kyphosis (a curve causing a rounded back or hunchback).

It’s important to know that medical advancements in sickle cell management have redefined patients’ appearance. Many sickle cell patients are now extremely tall and obese, and otherwise lack many of those physical features I’ve noted here. It’s no longer possible to always diagnose sickle cell disease purely on appearance.

Most importantly, even if some patients don’t have the traditional sickle cell habitus, they’re still sickle cell patients. Their conditions must still be managed and given necessary care and attention. Looking different does not make them any less of a warrior.

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.