Bahrain Society for Sickle Cell Anemia Patient Care (Website) has been trying to raise awareness about the Sickle Cell disease and the premarital tests or genetic counseling that can detect the mutation causing the disease predicting the chances of inheriting the disease in a couple’s offspring. The Society has called for more attention to Sickle Cell Patients and made recommendations to the Ministry of Health in Bahrain, among those recommendations was a study demonstrating the need for a Sickle Cell Anemia Patient Care unit and how such a unit can prevent some of the tragedies that happen to families and friends that we read about in newspapers constantly.
Having little help from the private sector, and facing the problems of the limited resources of the Ministry of Health and the public's ignorance about the disease, the society is struggling in its fight against it, while the number of people living with the disease or carrying it is increasing with more couples having or carrying the disease ignoring doctors recommendations and having children who end up with the disease as well.
Sickle Cell is a life-long disease that can manifest with many symptoms and can lead to many complications. Patients with the disease suffer attacks or what is referred to as “Sickle cell crisis”. The severity of these attacks depends on the severity of the condition and the type of the disease the patient has.
Sickle Cell is inherited from parents the same way blood type is inherited. It is caused by a mutation in hemoglobin genes. Those genes have two alleles, this means that there are 3 basic conditions for this disease, either you have it (you have 2 abnormal alleles), or you don’t (2 normal alleles) or you carry it (1 normal allele and 1 abnormal allele).
The picture above shows what happens when a couple with Sickle cell trait (carriers) have kids. 25% of their kids will have the disease, and 25% will not have it while the rest 50% will be carriers like their parents. Carriers do not suffer the symptoms of the disease while people who have the disease suffer symptoms and complications ranging from agonizing pain to lethal attacks.
The society, trying to use a different approach toward awareness about the disease, have contacted a group of the highest religious clerks and scholars from the different sects to produce a “Fatwa” that will discourage couples who have the disease or carry it from marrying or having kids. Responses from some of the scholars said that this kind of marriage is forbidden (haram), while others said it’s not haram but it is highly recommended that it be avoided.
Of course, the need to get such a Fatwa to get the point heard in the first place is absurd so I won't comment on that, you gotta do what you gotta do, and if it works then great. But parents with this disease should keep in mind the price they’re making their kids pay and if the majority of the responses from religious clerks do not discourage this, then that doesn’t mean throwing caution and reason to the wind and making their future kids suffer the consequences.
* Edited picture (Original is courtesy of DukeHealth.org)