There is a hot topic over at the UKGreat Sickle Cell forum on FB. A gentleman posted this question: My genotype is SS and my fiance is AS. I love this girl very much because of her character. I intend to marry her. Should I go on? I need your candid advice.
I have very strong views about this as a sickle cell warrior. I have seen too many people with sickle cell get relegated to a lonely corner, dumped, and heartbroken just because of their genetic condition. I know many good men and women who are still single yet pining for a spouse even into their 40s and 50s. The fear of sickle cell is a strong thing, and I have to agree that not every person is up to the challenge of living and loving someone with sickle cell.
If you read my archives in the Love and Sex section, you will see that I struggled with my desire to have a soul-mate against my genetics, suffering many failed relationships and heartbreak in the interim. I had earlier ascribed to the notion of not wanting to have kids unless I was 100% certain that they wouldn’t get sickle cell. It had been drummed into me as a child, that I had to look for an AA to marry…so that my kids would all be AS. But I realized a few years later, that there is another option. I could marry whoever I felt was the right man for me, and if our genetics didn’t match up, then God, science, and modern medicine could help the rest of the way.
Because of this, I cannot advise this gentleman to dump his intended. If he loves her regardless of her having sickle cell…then I feel that he should go through with his plans. The only tricky part about it is the decision to have children. They both should decide if children are the end all be all. Not every couple has children…and yet, they still live wonderful and fulfilling lives.
If they do want children that bad, then they could adopt, have a surrogate egg where she carries the pregnancy, do genetic counseling, or selective in vitro fertilization (which is possible in the US and UK). In addition, with each natural pregnancy, she has a 25% chance of having a child with AS. This does not mean that 1 in 3-4 children will be AS while the others are SS…it means that with each pregnancy, she could have an AS child. I know a woman who had the same odds, had 3 children, and they all are AS.
Besides, the point of marriage is not to be a baby incubator, it is to share your life and love with someone else and have someone at your back who loves you and treats you well. Not everyone that gets married has children…and yet they still have very happy and fulfilling lives. We are living in a modern age, and the world is already overpopulated as it is. So choosing not to have children is not the end of the world.
Not everything in life is guaranteed. Even people with AS or AA can get diagnosed with a condition that has the potential to be more complex than sickle cell. And yet they still get to find love. Diabetes, Cancer, Heart problems, Hepatitis…it’s a long list of medical issues that humans now face. Healthy people get viruses that kill within weeks–nothing is guaranteed! Anyone can have anything, so why is sickle cell the one that is the must shunned and feared? Bah!
In addition, if your parents had known about their phenotype, and chosen to break up, abort, or not have you, where would you be today? I consider my life as a blessing, and as the only sickle cell warrior in my family, I love my parents for having me. I love my life, and do not consider it a burden.
So many sickle cell patients end up alone and lonely, without someone to share their life with because we in the community are even stigmatizing ourselves out of fear. We live our lives in fear of passing sickle cell to our offspring. Instead of wallowing in myths and fear, do your research! You can love someone with sickle cell, and to relegate this woman to a life without her love just because of her genetic condition—-THAT is NONSENSE!