[Guest Post] Bearing witness to sickle cell

Hello all, its time for another guest post.  This entry was sent by Neuyogi, a fellow Queen’s College Yaba Old Girl.  She has her natural hair blog https://livingcoily.wordpress.com/ documenting her natural hair journey.  Have a gander and appreciate!!

I’m still looking for guest posts so if you are inspired please send your entries to foxycleo@gmail.com.  

Back to Neuyogi post…………..

As a Nigerian who grew up in Nigeria, it is hard to go through life without encountering sickle cell disease (SCD) in some form. At the very least in a Nigerian movie. Fact or lie? Definitely a fact for me :) I became aware vaguely in primary school. But then in high school it hit home 'cos I got to see DrFoxyCleo go through crises. This experience actually helped inspire me to go into medicine. Then when I was 12 my first cousin was born. The cutest boy, however when he turned 2 he would come visit with a sling or cast around his arm sometimes and I asked why does he keep breaking his arm? And then being told that it wasn't broken, just swollen and painful from SCD . Since he was 2 and trying to get into things the cast/sling contraption helped immobilise the arm. He is the first in the family that I am aware of with the disease even though we have a number of carriers in the family, myself included. 

I remember my mom telling me how she once loved a guy and they were practically engaged but broke it off cos they were both carriers. My mom was in her 20s when this happened, while my aunt (my cousin's mom) met my uncle in her mid 30s and they got married even though both carriers. Made me wonder if age impacts these kinds of decisions? Growing up in Naija, it wasn't uncommon to meet a guy or girl you liked and after exchanging names, ages...then being asked about genotype. The first time I did that here too a guy I liked, he looked at me like I was bonkers. And then I found out lots of people here in the States, even Nigerians born here did not know their genotype, some did not know their blood groups i was astonished!

I did go into medicine and I have borne witness to sickle cell disease along the way. I volunteered in the sickle cell organisation for adolescents for 4 years and heard the dreams and fears of these young teenagers. It was there that we learned to refer to people as "patient with SCD" rather than "sickler". For some reason that lesson really impacted me, because it makes the SCD secondary to the person's identity rather than their whole identity and I believe it. None of the staff who work with me or even my co-residents when I was in training were allowed to call people Sicklers around me. It might be overkill but I believe in it. 

Some of my closest friends here have the disease and have gone through losing gall bladders, acute chest, transfusions etc. However, overall quality of life and care was better especially for those that used Hydroxyurea, which includes my cousin. He is 21 now and he has had 1 blood transfusion and 1 hospitalisation which is amazing! I also love that there does not seem to be a lack of romantic options for my friends and cousin, unlike in Naija when i was growing up and there was a pariah effect with some people. 

I have gotten to see patients being referred to as drug seeking and it was only in 1 case out of so many that this was actually true. I follow the sickle cell warrior blog and have found myself asking why not get a bone marrow transplant, but like my friend patiently explained, it doesn't go well for everyone and if you don't have frequent crisis might not be worth the risk. I remember the Kenyan lady I met at a conference, with SCD who married a carrier and had 2 kids without SCD by in vitro. I was amazed because with science and technology comes choices...but many religious pundits were outraged at this act of playing God. 

Most recently, my aunt had a serious medical condition requiring hospitalisation for many months. I went to see her and her husband, children and I took shifts to spend the night with her in the hospital. They have a family friend that is a nurse, who has a 22 year old son with SCD and when she heard my cousin with SCD was going to be included in the night shift rotation she was flabbergasted, and told me to tell my uncle to not allow it. I firmly told her I wouldn't do that because my cousin should not be placed in a bubble. I told her I have close friends with SCD  in med school and residency with me who took gruelling overnight call, long hours and survived. I told her my cousin has lots of water and gatorade in his overnight bag, and then added that if he were to have a crisis...then no better place than the hospital right and chuckled ....yeah she was not amused, and got off the phone angrily. I had heard that her son was in college, but he had a crisis so she pulled him out and now he lives at home and goes to community college, he lives under her wing and does not have many friends his own age, he does not work or drive. Yeah, that is all loving for a mother but not what I want for my cousin. 

My close friend recently got married 2 weeks ago to a fellow Nigerian and she is in her 2nd year of fellowship for paediatric haematology oncology. I am thrilled for all the patients that get to have her as a doctor! As there is nothing like a healthcare provider who actually gets it and what you are going through! I am so glad that her parents supported her dreams while supporting her during health issues unlike the nurse I mentioned it seems. I say it seems, because I have not walked in her shoes nor do I know her daily struggles, but I had another encounter regarding her son and that didn't leave me with a good impression either. 

Altogether, I am thankful that with each decade, there is increased awareness and resources for people with SCD to make quality of life better. Another friend, recently gave birth to a beautiful girl. Back in the day, people said it was suicide to have SCD and try to have a baby. So yes, there are ways to go but times a-changing and I am glad to bear witness!

Bitch don't kill my vibe...........

Happy New Years folks!!!!

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!!