By Saleh Faruq Gagarawa, Habiba Abubakar Ladan, Alfa Muhammad
Sickle cell disease is a group of disorders that affects hemoglobin, the molecule in red blood cells that delivers oxygen to cells throughout the body. People with this disorder have atypical hemoglobin molecules called hemoglobin S, which can distort red blood cells into a sickle, or crescent, shape. Sickle cell trait describes a condition in which a person has one abnormal allele of the hemoglobin beta gene (is heterozygous), but does not display the severe symptoms of sickle cell disease that occur in a person who has two copies of that allele (is homozygous).
Over the years people with Sickle cell disease face a lot of complications especially when ready to settle and get married this has to do with stigmatization and complications that a sickle cell patient has only one option of marrying a person who has AA genotype. People who live with sickle cell disease were advised not to marry person who has a sickle cell trait or a sickle cell patient even when in love. The question here is why should sickle cell patients not marry each other or why should carriers sacrifice their love for having a sickle cell trait? This is said because of the children they are going to give birth to will also have the sickle cell disease or 25% trait.
Parents play a significant role in stigmatization of sickle cell patients many parents in Africa doesn’t allow their children to marry a sickle cell patient even if the child has the required AA genotype to marry a sickle cell carrier and even patient , they see it as a taboo and of the idea that the patient will not live long or if it is a female they feel that the wife is not a wife material for their child to get married to this has to do with the barbaric culture that women are married to serve their husbands by cooking, and other stressful activities for their husbands. The culture has left many sickle cell patients single even when they have a fellow sickle cell patient or carrier whom they truly love but cannot settle with because they are both SS also because of the traumatic experience of rejection from the spouse parents.
The public sphere surrounding two sickle cell patients who wants to get married is that no good comes out of the marriage no matter the level of love they possess for each other as the cycle of crucial suffering continues for both the parents and their children. Sickle cell patients sometimes become burdens to their parents with their huge medical bills and constant medical care needs. These parents who have already experienced what it takes to care for a sickle cell patient tend not to allow their children to go into a marriage with another sickle cell patient.
This has brought a lot of disastrous situation especially in Africa, people living with such disease mostly fall in love with carriers of the disease or even with a fellow patient of such disease, the idea of prohibiting them from getting married to each other has left many in a distress who finally ended up marrying who they don’t love nor have feelings for this situation alone has led to having many broken homes, cases of emotional abuse and physical violence, this happens because from initial state the couple doesn’t actually love each other they had to sacrifice their love in other not to give birth to a child with sickle cell disease.
However there are quite a number of people who has sickle cell disease but went ahead and got married and they are now living with kids. Habiba and Sadeeq (not original names) are both sickle cell patients who fell in love with each other since 2014 but are still afraid of confronting their parents with the situation, the strong bond between them has since made them decide to have one or two children when they finally get married. Habiba and Sadeeq described their relationship as the best thing that could ever happen to them, Sadeeq said he understand Habiba more than the previous girls he dated, he said he has never loved any woman the way he love Habiba and can’t stand to see her hurt. Habiba on the other hand said she have been in relationships for about 5 years back and all of them were AA. Being a Sickle Cell patient never gave her room to consider any other genotype aside AA. The experience with her past AA boyfriends was nothing to write about. She said.
‘’They loved me, that’s a fact I can’t deny but the compatibility wasn’t there, they were not understanding and caring enough. They found faults in almost every little thing.
I could clearly remember how the last guy I dated after putting hope I will get married to him told me that his family won’t allow him to marry me because I have sickle cell disease
He sent a message through WhatsApp and informed me. I received the shock of my life. It took me days before I could get through the trauma. So honestly my experience with them wasn’t a pleasant one at all’’
Habiba said falling in love with a fellow SS. Someone she share the same Genotype with is the best and sweetest thing that has ever happened to her. She said it feels like the first time she is in love throughout her life. It just as if “MY LIFE HAS BEEN HANDED BACK TO ME AND MY DAYS FILLED WITH JOY”. Sadeeq is the most caring person I have ever met. My pain is his pain and my joy is his joy. He’s very understanding and always gives a listening ear. He’s so affectionate. He’s all I could ever have wished for’’
DPH NEWS and CLIQQ MAGAZINE reached out to a consultant and head of Haematology department of National Hospital Abuja Dr. David Ekaete Iyabisi to get her view if sickle cell patients or carriers can get married.
Dr. David said the only thing they advocate is enlightenment and knowledge so those who are sickle cell disease patients are advised that whoever they are going to marry they prefers that the genotype be AA because of the complications that can arise from the children born when two carriers married themselves. When asked if children are the only hindrance stopping patients from getting married she affirmed that there are no other issues.
‘’Basically the children they are going to give birth to and the way the genetic works is not all the children, the only thing is that in every pregnancy there is a 25% risk that the child may have sickle cell but unfortunately science has not giving us the level of picking which 25% so we can’t say when you get pregnant if it is the 25% that will have sickle cell or not so as you would know they are families that has 3 to 4 children and all of them are sickle cell. Parents that have sickle cell if they get married to people who have AA genotype none of their children will have the sickle cell, the children will just be carriers. Alternatively science has also become more advanced a lot of things has gone on so now we have things that is called in vitro fertilization with genotype selection the only thing is that this things are expensive so am not sure if it is within the reach preview of everybody but there’s option that if two carriers wants to marry themselves which we strongly discourage they will have to think about assisted reproductive techniques to make sure that they don’t give birth to children with sickle cell even with those assisted with reproductive techniques it’s not 100%. what happens is that the couple cannot conceive naturally they will have to go through a process known as in vitro fertilization which means that the sperm has to be collected from the husband, the Egg from the wife and then they meet them under lab condition and then they now check the features that is formed from the gametes to make sure that it doesn’t have a sickle cell trait so it is only the one that they checked that doesn’t have a sickle cell gene that they will now put into the mother to proceed.’’
Dr. David was further asked if she encourage both patients or carriers of sickle cell disease to get married and she said there is option now if they can afford.
‘’There are no many options it’s just one which is the assisted reproductive techniques and it’s expensive it will cost two million so it’s not cheap. So the first thing like I said is you educate, the final thing it is the two people that are going to have to make up their mind if they can live with the consequences there are no guarantees in life so all we can do is place the options between them of what can happen the final choice is placed solemnly in the hands of the intending couple. If sickle cell patients or carriers can afford it they should go for it, its fine that is why science has been working to see how we can give people an alternative because before now the only alternative we have was if you are a carrier or you have sickle cell please don’t marry another carrier look for someone who has AA genotype but science has gone up to give us this option and there is still a lot of work going on in the science world so maybe in few years down the line we may have more options but for now we only have the reproductive technique but the most important thing is number one you first need to know your genotype because knowledge is power. The in vitro fertilization can be carried out in Nigeria but only in specialized hospital like DIFF hospital, Nisa premier.’’ David said
This report was compiled by DPH NEWS and CLIQQ MAGAZINE