There are a number of ideas that pop in our minds when we meet an individual with sickle cell disease, some are explained here in an attempt to help us understand and make our own choices.
1) All people with sickle cell disease die young
This was once the case because of little available knowledge and poor quality care as displayed in Felicia Onyewadume’s play, ‘Science comes to Agbo village’, where a distraught mother unknowingly blamed the frequent illness of her child on witches and wizards in the village. But we now know what it is – an inherited blood condition. Although they are prone to infections, painful crises, at risk of damage to various organs and having a stroke, with adequate medical care in recent times, people with sickle cell disease get to live long full lives, even rising to high positions in their careers, like anybody else
2) People with HbAS and HbAS are incompatible for marriage –
This also includes people with HbAC or other abnormal haemoglobin (Hb) genes. The reason this idea is so rampant is because people assumed that preventing such marriages would stop the gene passing to their children and in turn reduce the number of people with the disease. But we know that the risk of such a couple having an affected child is 25% in every pregnancy and with current technological advancements, such parents can select the DNA of their children before birth. Though not advised, such marriages still remain a matter of choice
3) Women with sickle cell disease can not give birth normally –
Sickle cell disease does not stop a woman from having children through normal vaginal delivery but other factors may influence the type of delivery she would have, as well as the presence of complications for which she would require special care and monitoring during her pregnancy
4) It costs a lot of money to manage sickle cell disease –
The various drugs and other treatments needed to manage the condition require a lot of commitment, especially financially but this largely depends on the individual case as some have less severe disease than others. Coping with the disease also requires emotional support which could be from relations, friends, colleagues or other people also living with the disease. Not only do the affected individuals need support, their care givers, often their parents, also need support and encouragement. A number of support groups exist in Nigeria, regulated by the Sickle cell foundation in Nigeria (SCFN).
5) People with sickle cell disease always have yellow eyes –
Sometimes, the eyes can be yellowed/jaundiced as a result of the rapid destruction of red cells in the blood. This is often associated with crises. It should be noted that not every one with yellow eyes has sickle cell disease. Jaundice can also occur in liver disease like hepatitis, when certain drugs are used, and in other instances
6) Sickle cell disease is contagious
This is not so as the disease is genetically passed down from parents to their children. Unlike conditions like Tuberculosis, sickle cell disease CANNOT be transmitted by close contact
It is not surprising though that people who carry the sickle trait (HbAS) are largely stigmatized on account of this, especially when contemplating marriage. Several options are becoming available for such people to birth children without the SS genotype. And having the SS genotype does not signify death or poor quality of life. With conscientious medical management, people with the disease live long, fulfilling lives.
Please feel free to share your experiences with sickle cell disease and your personal opinion.