I just learned today that September is Sickle Cell Awareness Month, and I’m glad there is a time to focus on this disease and the work being done to eradicate it. I encourage you to read up on sickle cell anemia/sickle cell disease if you know nothing about it; a quick search on google will reveal a lot of sources of information. I also encourage you to donate to a local organization if you have the means. Any amount is helpful, and if you spend a couple of dollars on coffee, a new nail polish, or lunch out every day or every week, it’s easy to justify making a contribution. I know money is tight so I’m only asking those who know in their hearts they can spare $10, $30 or more. Like last year I chose The Sickle Cell Association of Ontario.
The only time I’ve written about sickle cell anemia was when I connected it to a question I was increasingly being asked while trying to meet a Good Naija Man. These potential husbands would ask me: “What’s your genotype?“, a strange question unless you were born and raised in Nigeria. At the time of that entry (March 2010) I did not know my genotype, though I knew my mom was AS. My view was that if it turned out I was AS, I would not let that stop me from marrying another AS and I received quite a few comments from people who disagreed with my view. It’s an emotionally charged topic: those who have had direct contact with people who are suffering with sickle cell anemia cannot understand how someone carrying the trait (genotype AS) would knowingly marry and risk getting pregnant with someone who has the same genotype.
I have not known anyone who has suffered from sickle cell disease, and the reading I have done on the treatment of the disease in North America has been encouraging, though I know that not everyone in the world has access to the available treatments. I now feel that if I was AS and was marrying another AS, we would have to meet with a genetic counselor to examine our options very carefully. I am not comfortable with some of the options out there, such as terminating a pregnancy that reveals the child has sickle cell anemia, but I know that a genetic counselor would give us a lot of food for thought. Also, when it comes to calculating the odds, one cannot forget the God factor either, and the whole experience would definitely be faith-testing.
I wrote an update on my original entry saying that I was AA, and I got tested again this year to make sure the first test was accurate. I encouraged my sister to take the test and she is AS. When she asked a few questions about what it means to be AS, her doctor referred her to a geneticist and she has received more information than she cared to know, including ethnic backgrounds she should think twice about getting involved with due to a thalassemia that is present among that race (I think it’s beta thalassemia, but I could be wrong…I hope the doctors among us will correct me!). I find the genetics side of things so interesting.
All of this to say that I applaud those who have the disease and are fighting it and keeping strong in the face of all it entails. I pray that we will see a cure in our lifetimes.
Updated to add: This entry by Ginger on Sickle Cell Anemia is a must read!