Myths and Truths
Only the Black Minority Ethnic population gets Sickle Cell Disease
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.
Everything you need to know
Myth: I was informed that our child has got Sickle Cell Disease because both of us have a defective gene?Truth: This is true for one form of the disease (known as HbSS), but there are other types in which only one parent has passed on the Sickle Cell gene and the other has passed on a gene for another type of anaemia, such as thalassaemia, that combine to produce sickle cell disease.
Myth: People with Sickle Cell disease cannot get malaria.Truth: This is true for one form of the disease (known as HbSS), but there are other types in which only one parent has passed on the Sickle Cell gene and the other has passed on a gene for another type of anaemia, such as thalassaemia, that combine to produce sickle cell disease.
Myth: Nothing has changed in Sickle Cell treatment. It’s the same for my child as it was for my uncle who died at a young age of Sickle Cell 30 years ago.Truth: Sickle Cell treatment now is greatly improved from 30 years ago-–or even 5 years ago. People with Sickle Cell now have a life expectancy at least into their mid 40’s due to several recent advances in care. Methods for preventing infections and treating complication have heightened the improvement in life expectancy. Early detection of sickle cell through newborn screenings also improves survival from lung, spleen and stroke problems. Bone-marrow transplants now can cure some Sickle Cell children who have immunologic-matched siblings to serve as donors. Screening children to find those at high risk of stroke allows effective preventive treatment. Making sure that you and your child’s doctor keep up-to-date with sickle cell care will allow you to enjoy the benefits of future medical advances. The future looks bright because more treatments are in the research pipeline.
Myth: All of Sickle Cell care is medical in nature and administered by doctors and other healthcare workers. Nothing is under our control as a family.Truth: The reality is there’s a significant amount family members can do to care for a child with sickle cell. It is imperative families need to strike a balance between completely denying the presence of the disease, and living in a bubble. They can learn to recognize problems early on, when medical treatment often is more effective, and they can take precautions to ward off pain crises. Flexibility in responding to problems and building up a support system of friends and family can make a big difference in how much a child’s life is affected by Sickle Cell.
Myth: I don’t need to tell the doctors about my child having Sickle Cell trait, because this condition has no health implications at all.Truth: Although it is a rare occurrence, Sickle Cell trait can cause bleeding from the kidneys. And under extremely severe conditions-–at the limits of human endurance, such as exercise at high altitude, for example-–people with the trait can develop the same health problems as someone with Sickle Cell disease. Also, when your child grows up, if she and her partner both have Sickle Cell trait, they should be aware that their children could be born with Sickle Cell disease.
Regular medical checkups and treatment are also important. Checkups may include tests for possible kidney, lung, and liver diseases. See a sickle cell anaemia expert regularly. Also, see an eye doctor regularly to check for damage to your eyes.
Learn the signs and symptoms of a stroke. They include a lasting headache, weakness on one side of the body, limping, and sudden changes in speech, vision, or hearing. If you have any of these symptoms, report them to your doctor promptly.
Get treatment and control any other medical conditions you have, such as diabetes or kidney problems.
Talk to your doctor if you’re pregnant or planning to become pregnant. You will need special prenatal care. Sickle cell anaemia can worsen during pregnancy. Women who have sickle cell anaemia also are at an increased risk for an early birth or a low-birth-weight baby. However, with early prenatal care and frequent checkups, you can have a healthy pregnancy.