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: People with Sickle Cell disease can contract malaria, and may either die or suffer through it and survive, just like anyone else. However, people with Sickle Cell trait tend to be more resistant to malaria-the trait doesn’t completely protect a person from infection, but it makes death from malaria less likely. This survival advantage is believed to explain the worldwide pattern of Sickle Cell in many peoples who frequently are exposed to malaria, such as those who live in sub-Saharan Africa, around the Mediterranean, and on the Indian subcontinent.

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.[