Why sickle cell education, access to testing are so important

A columnist explains why she promotes greater sickle cell disease awareness

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by Mary Shaniqua |

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Sickle cell disease is one of the most common serious genetic conditions affecting people in England, where I live. An estimated 15,000 people have the disease here in the U.K. According to the Sickle Cell Society, approximately 300 babies are born with sickle cell each year in this country. Globally, that figure is about 300,000.

As a sickle cell patient, I find these statistics concerning. I think it’s crucial that we have more education and awareness around this issue so that people are empowered to make better choices.

I’m not suggesting that sickle cell patients aren’t entitled to life. I am a strong proponent of the right to life for all disabled people. But I’m also not naive, and I know that we need to change things if we want to tackle sickle cell disease as a global community.

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Taking a holistic approach to sickle cell disease management

Education is paramount

Many people are unaware that they have the sickle cell trait. Most carriers of the sickle cell trait have no symptoms, yet they can pass the trait on to their children. So it’s not surprising that people can be carriers their entire lives without even knowing it.

My parents were well into adulthood when they learned they were both carriers of the sickle cell trait. That knowledge came as a result of my sickle cell diagnosis. If we imagine a scenario where I am born without sickle cell disease, would my parents have ever known they carried the trait?

I use this example to illustrate why there needs to be a bigger push for genetic testing and counseling. Ideally, this should happen before people reach the stage of family planning.

In addition to this, I think it’s important to raise greater awareness about what sickle cell is and how it affects people.

Correcting assumptions

I’ve also noticed that some people have inaccurate information about sickle cell disease. For example, I’ve heard people erroneously mention their blood type in discussions about inheriting the sickle cell trait or disease. Some have told me they had a test to find out their blood type, and it showed they didn’t have the sickle cell gene. When this happens, I must explain to them that they had the wrong test.

While sickle cell disease can be diagnosed with a simple blood test, it’s not the same one that determines your blood type. As Sickle Cell Disease News explains on one of its resource pages, “Sickle cell disease is caused by a mutation in the HBB gene that leads to the production of abnormal hemoglobin — the protein that carries oxygen in red blood cells. … Generally, all individuals have two copies of a given gene, one inherited from each parent. People who inherit only one mutated copy of the HBB gene usually do not show any symptoms of sickle cell disease, and are said to have the sickle cell trait. However, those with two faulty copies of the gene will develop sickle cell disease.”

Correcting this misunderstanding is imperative so that people request good information and use it to make informed decisions.

According to the National Health Service (NHS), people in the U.K. who are pregnant are permitted to request a blood test from their doctor to find out if they carry a gene for thalassemia, an inherited blood disorder. The NHS explains: “Those at high risk of being a sickle cell carrier are offered a test for sickle cell. If the mother is found to be a carrier, screening is also offered to the father. This test should be offered before you’re 10 weeks pregnant. It’s important the test is done early. If you find out you’re a carrier, you and your partner will have the option of further tests to know if your baby will be affected.”

If people are unaware that they are entitled to this testing, they likely won’t know what to ask for, and they might ask for the wrong blood test.

Empowering people with a better understanding of sickle cell disease, diagnosis, and testing and removing the barriers to testing are necessary to better equip us as a society.

Speaking from personal experience, sickle cell disease is difficult to live with and manage. Let’s make sure we’re doing our best to help others learn and understand more about the disease.

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.


Tyrone. Hodge avatar

Tyrone. Hodge

Shaniqua, thank you for posting your chronicles. I am a caregiver to my wife of forty-six years, who suffers from sickle cell anemia. She will not like me saying her age, but she is seventy-three, the last two; she's been undergoing dialysis. In addition to undergoing dialysis, she suffers from pulmonary hypertension. As an RN, she's been able to anticipate when a crisis is coming on. Of course, she's educated herself as to the do and don't of sickle cell anemia. To complicate matters, Elena has underegone both hip replacements. She has lost quite a bit of weight. I'd appreciate anyone's ideas of how to get her back to her weight of one-twenty. She eats well, so even though she's on a renal diet, she manages to have a good appetite.


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