Love and Sickle Cell — Not Exactly A Memoir…

I remember it like yesterday. I was barely on the cusp of thirteen. We were in our old house; my big sister and I were helping mum change the curtains in the bedroom. We were standing by the window talking about many things and sickle cell somehow found its way into that conversation.

All my mum said was something like, “Araba, you’ll have to take care who you marry when you’re older. You’re AS. So you have to find a man who’s AA when you’re getting married. Baaba and Ebow are AA so they’re okay.”

I didn’t think much about it. But the underlining culmination in my understanding that day was that I was different and I didn’t have a choice about the matter.

I had relatively normal health growing up. Nothing out of the ordinary and the fact that I carried the sickle cell trait didn’t affect anything about my life. In high school, I took a particular interest in understanding what the sickle cell trait meant and meant for me going forward. I also made sure to understand the rhesus factor.

In my very first relationship in the university, I made sure to ask him about his genotype and he affirmed that he was AA. Whew. That was easy. We can fall in love now. Unfortunately after almost 4.5 years of being together, the relationship fell through in the most sordid, betraying and painful way. Well, that’s a story for another day. It took me close to a year and a half to pick up my life after that and be even relatively ready to accommodate someone in my space.

And of course, there was the general mundaneness of getting to know someone again and bringing up genotype early enough, but not too early to make it sound weird when I liked someone too. When I like someone enough to consider them in the long term, I’d always find a way to bring up a conversation about genotype, otherwise I won’t even bother.

I think generally, the only major way in which sickle cell has affected my life has been when it comes to love.

It sucks to find an amazing man, especially after meeting a not-so-good one and let him go simply because we’re both AS or something of that sort. That’s happened twice. The first hit me like a ton of bricks. Lord Jesus kraa why? I cried. This was a great man, who loved me to bits and I did too. He was an amazing gift; a breath of fresh air, particularly after my last sordid experience.

Lord Jesus kraa why? Eh why?

My heart sank when we had that conversation. I already knew my stance. It was too dangerous to gamble. Sickle cell wasn’t a joke. I’d seen first hand the difficulties faced by people who lived with sickle cell disease (SCD) and I could never forgive myself if I willingly and consciously put my own child in such a situation especially if I had the foreknowledge to prevent it.

So I said no even though he still wanted us to get married irrespective of emerging implications. Love is not always enough. Or is it?

In my opinion, love alone is not enough to sustain a marriage. Or is it?

It was the same incompatibility situation with the next man who caught my attention. I’m grateful for one thing though. These wonderful men had no prior knowledge of their genotype until they met me. I brought them to their awareness of checking their status and perhaps they’d make more informed decisions about partners and procreation going forward.

After the first man (he actually thought he was AS and that was our initial issue, but he wasn’t sure. So we went to take the test and found out that he was even SC. It was surprising, even for him because, he’d had no crisis or serious issues with his health all his life — and he was in his 30’s. He lived a normal life), I began to consider the options for people with sickle traits (AS or AC).

The second person also happened to be AS and it was tough, and although I was a fighter, this wasn’t the kind of thing that you could fight alone. The other party also needed to fight with you in the same breath, and there are complex layers of family impressions to muddle through etc.

I begun to think about options. Should sickle cell really be the end of a good thing? I interrogated adoption. But you know Ghana and our social/ cultural setting.

What would it mean for two capable and virile people to decide to not have children simply to prevent the possibility of giving birth to a child with SCD? Would primary/extended family or society understand? What would the stigma be like? Would both parties commit to that decision in the long haul or succumb to side issues and infidelity along the way?

Often, love looks like cloud 9 when its fresh and brand new, but when pressures push, what would happen? Would it crumble? SCD is painful and financially and psychologically expensive to manage both for parents and especially for the carriers (warriors).

There’s no way to quantify the discomfort or stigma to SCD warriors. I think we should start having more conversations on the normalcy of adoption and the choice for couples to have or not have children.

While it was apparent that things with the second man wouldn’t work, I started contemplating the next options for couples which sickle cell traits. IVF (In vitro fertilization) with preimplantation genetic testing.

IVF involves a woman taking medications to stimulate her eggs. The eggs are retrieved and fertilized with the partner’s sperm. The embryos grow in the laboratory until the blastocyst stage, which is typically day five or day six. At this time, embryo testing occurs, which involves taking a small sampling of cells from the embryo and sending it for analysis. The analysis of the embryo is known as Preimplantation Genetic Diagnosis (PGD) or Preimplantation Genetic Testing for Monogenic Disorders (PGT-M).

In simple language, they’ll test all the fertilized eggs (embryos at this point) and isolate those that are AA or AS to be reinserted into the womb for it to grow and become a baby. The SS embryos will be discarded.

The procedure however isn’t 100% success guaranteed but it is worth the shot because people have had good success with it. The last time I checked, as at 2020/2021, a doctor at Lister Hospital (Ghana) indicated that one round of IVF of such nature averagely costs between 20,000–35,000 cedis. You can watch the documentary here: https://youtu.be/D5bd5yf7PdM

There’s also the choice for surrogacy. There’s also bone marrow transplant ( This cures the sickle cell disease entirely, but I’m not sure how common this procedure is in Ghana or even globally. It’s expensive and requires a matching donor).

I mean, the options are endless, but none of them are easy and they all do require some amount of courage for you and your partner, whether it’s choosing to walk away, choosing to stay and not to have biological children because of the uncertainty, adoption, surrogacy, IVF with PGD or a sickle cell bone marrow transplant.

Honestly, I don’t even know why I’m writing or sharing all this. Why am I putting my inside life on display? But maybe this helps someone. I’d also like to say kudos to Sickle Life and Lemuel Hearts Advocacy for Sickle Cell Anaemia (on Facebook — I think they’re doing something commendable for SCD warriors).

I think it’s important for us to create more awareness on knowing our genotype because if we want to end sickle cell disease, we must first be equipped with the right knowledge to make the right choices.

I ask people who have a shot with me early enough because it’s not now that I’ve fully finished falling in love (which doesn’t even happen often) that I’m now coming to remove my heart because I didn’t ask important questions lol.

I also talk to God about it, because honestly, it can be frustrating sometimes, especially when you’re a good person, praying that life deals you a better hand. You’ll find some pretty terrible men who are AA or people that the vibe just isn’t there and then some very good and sweet ones who are rather AS. This life ankasa, e no balance.

But I’m confident that God who knew me when he formed and made me this way, has made a partner that is fit for me in every way, and I won’t ever settle for less. What’s mine won’t elude me. Until what’s mine arrives, I will be content in God’s present provision and keep enjoying my life (as some of you have consistently witnessed). I’m determined to live a full and happy life no matter what, and I trust in God’s faithfulness.

I pray that a time soon comes when permanent SCD treatment is affordable to all, where people no longer have to live in pain or in the fear of stigmatisation, where people feel more in control of their options or don’t have to walk away from a good person on grounds of genotype incompatibility. I pray for a better day for us all.

#robbiewrites @radiantrobbie 18.6.21

Please share with as many people who need this. If for nothing at all, let’s raise awareness, advocate and share knowledge about people’s options.

#randomthoughts #sicklecell #WorldSickleCellDay #SickleCellAwareness #genotype #gettested #SickleLife #sicklecelltrait #19thJuneWorldSickleCellDay #love #SCD

I wrote this piece exactly a year ago and shared it on Facebook, and I honestly don’t know why I wrote it other than to give myself and others a voice to express the nuances of this sickle cell thing because it can be so frustrating and overwhelming on certain days, particularly more for those who carry the disease and not merely the trait. I’m thankful that I wrote it — it is my truth and many others as well — whatever our lot, it is well with our souls. Writing this has been my tool for awareness and advocacy and I’ve taken it very seriously.

I thank God that the more I live, the more fearless I become about the uncertainties of the future — the more I lose the pressure of towing a line that society has set for me. I thank God for contentment — the gratefulness for God’s present provision in my life, knowing that he won’t fail me.

I trust God more to have my life figured out with incredible detail. What’s the worst that could happen when God is here? I’m getting more comfortable in my discomfort. I am happy. God is always in control, even when it doesn’t look like it.

You’ll be fine my darling, you’ll always be fine…

#robbiewrites #radiantrobbie 19.6.22