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!
I think you are answering that question EMOTIONALLY. Yes technology has improved THANK GOD and now people can do electrophoresis to know if they are either AA, AS or SS. With that in mind, knowing your status and marrying someone with whom together you have the chance of giving birth to a kid with sickle-cell anemia is SELFISH if you do intend to have kids (I'm not talking about adopting, e.t.c. but of continuing your lineage). Ofcourse I am aware that not everyone with sickle-cell has crisis but unfortunately MOST do so it is selfish to the kid(to have to go through painfull crisis and any other complications), the spouse(to keep worrying and constantly going to the hospital with the kid) and the family (the stress of worrying e.t.c). The guy in the question I believe is the one with sickle-cell (SS) or anyone with sickle-cell or with sickle-cell trait(carrier/AS) should marry someone who does not have sickle-cell and who is not a carrier (AA) if they intend on having children (and again I am not reffering to adopting, e.t.c) to prevent heartache in the long hual (e.g. death of a child, miscarriages, stress from constant worrying and hospital trips e.t.c) until a DEFINATE cure is found. This is coming from someone (myself) who is a sickle-cell carrier (and some of us do have crisis since nothing else can explain my symptoms) and someone(myself) whose elder brother was a sickle-cell patient/individual (he died at the age of 24years old). The guy in the question has been in-love before I believe so just like this girl he wants to marry, he will find someone he will eventually love who is not a carrier but AA and he can marry if he intends on continuing his lineage. Many AA's are not scared of marrying sicklers since they know their kids will not be sicklers.