Sorry I've been able to post in a minute, what with the job change and the fact that my body for some reason is really resistant to change :D but we'll save that conversation for another time.
I wanted to start the New Year with something light-spirited and inspirational like New Years resolutions and plans for 2015 but I just read something that pissed me right off!!!!
Let me put some context to this upcoming rant...........
One of the reasons why I started this blog was because I felt that there is more than enough awareness on prevention and not enough awareness to those who live with the disease.
PREVENTION - it seems to be the buzzword in the media on sickle cell. Now don't get me wrong there is nothing wrong in spreading the word but in Nigeria there is a nasty undercurrent to the prevention train. Case in point, the article that inspired this rant: Before sickle cell sickens you in a cell... Now apart from the fact that this is a poorly written article one section in particular had me seeing red.
KNOW YOUR GENE BEFORE MARRIAGE
The days of ignorance as a result of little medical research and public awareness are over. Society holds everyone responsible to guard against uninformed relationships leading to marriage or child bearing outside wedlock.
While delivering a lecture on SCD – ‘Know Your Gene Before Marriage’ in Lagos recently, Dr. Martins Irhoeze told the workshop that with medical research and public awareness embarked upon by the health ministry and religious bodies, there is no excuse for anyone to fall victim to the disease or procreate children with sickle cell anaemia.
Just as the antidote to HIV-AIDS is abstinence, the fool-proof cure for SCD is complete prevention; and, like HIV-AIDS, it is easy to avoid the SCD because all a sensible adult needs to do is not to attempt to ‘acquire’ the virus that causes AIDS; acquiring is a decision and that is where individual responsibility comes in.
“Similarly, a sensible adult going into a relationship can easily avoid the problem of SCD by ensuring the genotype of his or her partner before marriage is contemplated.”
SKREECHHHHH Now I know this bitch DID NOT just compare prevention of SCD to the prevention of getting infected with HIV-AIDS!!!!! Really?
Martins praised some religious organizations that created marital counseling departments where intending couples are made to present their genotype test results; some even go the extra mile to oversee the test themselves before the intending couples are counselled on other areas preparatory for marriage.
I've always thought that Church's getting involved in the testing was a tad bit invasive but there are merits to this exercise.........
“The foundation of marriage today must be based on a thorough knowledge of what sickle cell disease is as well as the necessity to know and ensure your genotype compatibility with your partner. The distinction between AA, AS and SS must be clearly understood by both partners before marriage is embarked upon.”
Breathe Foxy Breathe because the clincher is coming..........
Martins painted graphic pictures of the consequences of ignoring the genotype pre-marriage test. “People with incompatible genotype combination should not get married and those who are already in relationships, must call off such relationships.”
I would love to hear verbatim what these graphic pictures are but in the meantime, who on earth made you judge and jury?!!! #*$*#*$*£
I'm all for awareness of how to prevent the disease, but I guess my irritation comes from the forceful tone of 'People with incompatible genotype combination should not get married and those who are already in relationships, must call off such relationships'. Awareness should not be about fear mongering, it should be about education, enlightenment and trusting that individuals come up with the answer that works for them. Relationships are hard enough without bringing more fear into the mix!!
So I searched the internet to see if there were any sites that discussed SCD prevention in the right way and I found this Ask Dr. Craig!: Sickle Cell Disorder. I took the liberty of taking some snippets of the article. If you wish to see all the information please click on the hyperlink.
Get married and have no children
A good number of people, especially in the western world are choosing to get married and not have any children. Whereas in Africa children are seen as a completion to the marriage and are essential for keeping the family name alive, couples in Europe, Asia and the Americas are increasingly comfortable with limiting the scope of their marriage to the companionship that being together brings.
Get married and adopt
Some people choose to adopt children instead of having any of their own. Adoption is commoner in the west, and in some places like Hollywood has actually become a fad, with stars like Brangelina having adopted many children from all over the world. Adoption services are possible in Nigeria through the many orphanages here.
Get married and throw the dice
The odds of having a healthy child without any intervention are seemingly good. Three out of four. This means that there is a 75% chance that every given pregnancy could be either AA or AS. The other 25% is the likelihood of the baby being born SS. For some people these odds are good enough and they go ahead to marry and have children in the hope that the odds would be in their favour.
It is important to make clear again at this point that there will be couples who take this route and are fortunate enough to have all their children healthy (AA or AS), or have a mixture of AA, AS and SS. However, there are also couples who unfortunately go ahead to have all their children born with the disease.
Prenatal diagnosis
Some people don't like leaving things to chance and may feel that the 25% chance of things going wrong is too much of a gamble for them. In prenatal diagnosis, the couple throw the dice but are able to know before the baby is born what its genotype will be.
Doctors are able to take some samples from your baby while still in its mother’s womb (at this stage it is called a foetus) and determine what the genotype is. There are two ways of doing this; Amniocentesis and Chorionic Villus Sampling.
Pre implantation Genetic Diagnosis (PGD)
The aim of PGD is to ensure that couples have the best chance of having healthy children of their own. To do this the doctors will collect a number of the wife’s eggs (around 6-10) and fertilize them in the lab with her husband’s sperm (just like they do in IVF treatments). The fertilized eggs (embryos) are allowed to develop for three days and then one or two cells are removed from each embryo. The genetic material from the cells are tested and the genotype of each embryo is determined. Only those embryos that are AA are retained and the rest discarded.
Break up
For some couples, the amount of time, energy, emotions and finances required to have healthy children is seen as too demanding. They opt to go their separate ways and try to find love elsewhere.
Now this is the responsible way to enlighten young couples on their options regarding Sickle cell disease on not the driffle that I see being peddled on the basis of religion or lack of tact. No one has the right to tell people what to do in these situations. Its their decision to make and not anyone else's.
Okay rant over...............
Happy New Years, 2015 is looking to be a cracker of a year!!!
Toodles!!
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