[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!