MYTHS AND TRUTHS

There are a lot of myths around sickle cell disease, and stigma because of the myths.

Here we bust a few of those and shed light on the truth.

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Myth

Only the Black Minority Ethnic population gets Sickle Cell Disease.

Truth

Sickle Cell is a disease that affects people of all different cultural and ethnic backgrounds, including African, Arabian, Israeli, Greek, Italian, Hispanic, Turkish, and Pakistani.

Contrary to popular believe, it is entirely possible for a blond-haired, blue-eyed child of Northern European extraction to have Sickle Cell disease. For this reason, in all UK hospitals, all ethnic backgrounds now are screened at birth for the type of haemoglobin responsible for causing Sickle Cell disease.

Sickle Cell is not contagious. It’s strictly an inherited disease, and only people who are born with this genetic defect can develop it.

We understand the challenges that individuals living with sickle cell disease face and work tirelessly to provide compassionate and effective support.

Myth: I was told that the reason our child has sickle cell disease is because both of us have a gene defect?

Truth: While this is accurate for one form of the illness (known as HbSS), there are other forms in which just one parent passed on the sickle cell gene and the other parent passed on a gene for a different type of anaemia, like thalassaemia, which together result in sickle cell disease.

Myth: Doctors and other healthcare professionals provide all sickle cell treatment, which is medical in nature. As a family, we have no control over anything.

Truth: There is a lot that family members can do to help a child with sickle cell disease. Families must establish a balance between denying the condition and living in a cocoon. They can develop the ability to identify issues early on, when medical intervention is frequently more successful, and they can take preventative measures to avert pain crises. The degree to which Sickle Cell affects a child’s life depends largely on that child’s ability to adapt in the face of challenges and establish a network of friends and family as supportive allies.

Myth: Nothing has changed in the management of sickle cell disease. It’s the same for my child as it was for my uncle, who died from sickle cell disease at a young age thirty years ago.

Truth: The treatment for sickle cell disease has significantly improved from 30 or even 5 years ago. Due to a number of recent advances in medicine, people with sickle cell disease now have a life expectancy of at least into their mid-40s. The lengthening of life expectancy has been accelerated by techniques for treating complications and preventing infections. Newborn screenings for sickle cell disease has also increased survival from lung, spleen, and stroke issues. Some Sickle Cell children who have siblings who can donate bone marrow and are immunologically matched can now be cured. Children who are at a high risk of stroke can be identified by screening, allowing for efficient prevention. You will be able to benefit from future medical advancements if you and your child’s doctor stay updated on sickle cell treatments. Because new treatments are in the works, the future appears promising.

Myth: People with Sickle Cell disease cannot contract malaria.

Truth: This is correct for one form of the condition (called HbSS), however people who have sickle cell disease can still contract malaria because not all of their body’s cells are sickled at once. When you get malaria, the malaria plasmodium can infect your regular blood cells, and if you have sickle cell disease, you run a higher risk of developing complications like organ damage and tissue ischemia.

Myth: My child carries the Sickle Cell trait, but this has no bearing on their health, so I don’t need to tell doctors about it.

Truth: Sickle Cell trait can, despite its rarity, lead to kidney bleeding, and in the most extreme situations—during activities that push the limits of human endurance, like high-altitude exercise—it can cause the same health issues as Sickle Cell disease. Furthermore, if your child becomes an adult and marries someone who also carries the Sickle Cell trait, they should be aware that their offspring may be born with Sickle Cell Disease.

symptoms

The importance of regular health checks and treatment cannot be overstated. Check ups may involve tests for potential kidney, lung, and liver diseases. Frequently visit a sickle cell anaemia specialist. Additionally, to check for eye damage, schedule routine visits with an eye doctor.

Discover the warning signs and symptoms of a stroke. Long-lasting headaches, limb weakness on one side, limping, and abrupt changes in speech, vision, or hearing are a few of them. Inform your doctor promptly if you experience any of these signs.

Treat and manage any additional medical disorders you may be experiencing, such as diabetes or kidney problems.

If you are pregnant or intend to become pregnant, consult your doctor. You’ll require special prenatal care. During pregnancy, sickle cell anaemia can get worse. Women with sickle cell anaemia are at greater risk for giving birth prematurely or to babies who are underweight at delivery. However, you can have a safe pregnancy with early prenatal care and regular checks.

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