Before coming to Kaduna for the fellowship, the biggest fear was Sickle cell Anemia, and this is the way it has been since my parents first found out I am Sickler (at age 5), I remember the day just like yesterday. It was on June 12, and I recall there were riots all around town. My father had been transferred to Abuja for work (CBN) so that meant my sister and I were home alone with my mom and an aunt I vaguely remember. I remember the fear in my mother’s eyes that day, not quite different from the fear I still see in her to date. I was in a lot of pain, crying, and unable to move my limbs, and my mom had no idea how to help me when even she herself did not know there was something called Sickle cell anaemia. I vaguely remember that there was no way to get transportation that day, and everyone was scared to go to the streets. I remember my mom backing me and walking a very long distance just to get me to a hospital. I also remember a good Samaritan stopping with a bike to help us but having to drop us on the way because the roads were blocked by rioters. I was in pain, but I remembered the smoke everywhere from burnt tyres, I remember the broken bottles all over the floor and the sticks. I remembered hearing the noise from a distance, although I think that was more to the pain because I know my mom had to pass by the rioters to get me the medical attention I needed. That was one of my earliest memories, and I recall thinking that the day was a rollercoaster ride. Which is not very different from what my life became after that. It was like the clogs were finally removed and there was a big reveal. Oh, there is something called genotype, and sickle cell is a popular condition in Nigeria. During that crisis, they only focused on me getting better, but after that, my father came home, and we all went to the CBN staff hospital where we sat through a brief lecture on SCD.
Sickle
cell anaemia is an inherited blood defect where the red blood cells in the
haemoglobin are sickled shape, meaning the normal round shape of red blood cells
becomes like crescent moons. Round red blood cells can move easily through the
blood vessels but sickle-shaped cells interconnect and can result in blood
clots. These blood clots can cause extreme pain in the back, chest, hands, and
feet. The disrupted blood flow can also cause damage to bones, muscles, and
organs. People with sickle cell disease often feel weak, tired and look pale.
The whites of the eyes and skin often have a yellowish tint: a distinct feature
that made us easily recognizable, but not me. My mother did everything in her
power to ensure I was not always with yellow eyes (except during very painful crises). She tried everything she could lay her hands on, medical and herbal,
and it worked because, by the time I got into secondary school, It was very hard
for my teachers (and doctors) to guess I was a Sickler just by looking
at me. That’s probably how my parents got away with hiding my health from the
entire world (family-inclusive). I didn’t really think much about it back then, but
now, I know they were trying to protect me as much as themselves. The thing is that
sickle cell anaemia patients still face a lot of stigmatization even to date.
It is saddening, but that is just how the world is. Parents separate their
children from sicklers because they do not want them getting sick: as if
SCD is a transmissible disease that can be passed just by being close to
someone. Friends usually systematically withdraw themselves from Sicklers
as soon as they witness a crisis.
CRISIS
is another very frequent part of a sickle cell patient’s life. It doesn’t warn
you, but it has a way of knocking you off your feet. You can go to bed healthy
and get woken in a few hours by pain. I got used to the pain very quickly,
especially because I always saw fear in my sister’s eyes and tears on my
mother’s face. I wanted to assure them that was alright, so I found myself
hiding my pains but of course, mommy always knew somehow. It was just her superpower,
having the gift to recognize when either of her daughters was not 100%
alright.
I
am 33 years old, and the Kashim Ibrahim Fellowship is the most exciting part of my life.
It was the best decision I could have made at this point, and I will forever
treasure the experiences I have had the privilege of having, with the incredible
people I have met during the new journey. Today is World Sickle Cell Day, and I
felt compelled to pen down something about the condition. Just like a doctor
said today at the awareness program we had at KASU (Kaduna State University),
no one can describe how sickle cell anaemia feels except the patient. There is
no truer statement. I recall someone asking the doctor to explain/describe to
him what the pain really was like so he would be able to sympathise with a
friend of his. A warrior (SCD patient) sitting close to me did say she would
rather go into labour every year than feel the crisis pain when they came
knocking. I decided to explain what the pain feels like to the young man that
asked if he’s reading this: My crisis pain, as I once described to a doctor, is
excruciating. It feels like I have a fracture in multiple parts of my body,
only it's even more painful than that. It feels like my bones are being broken
at the joints and it becomes very difficult to raise any limb. It feels like
fire is set on me, with the discomfort and it even becomes difficult to get a
comfortable position. Now imagine all these happening all at once: the multiple
fractures, the broken bones, and a blazing fire to get the party exciting. And
then when a pain reliever does give you a sense of relief and are finally able
to rest, it sometimes feels calm and peaceful, just like an ocean before the
storm hits- you wake up after maybe 2 hours and the pain hits you boldly in the
face all over again… No 2 crisis pain was similar, and no 2 sickle cell
warriors fight the same battle; none of us has it easy.
As
human beings, it is a known fact that we fear things we do not understand, the way my boyfriend’s parents told him they would disown him if he ever made me his
wife. See, I understood their fears, and even though my mother was angry, I
confronted her with the truth that she would have probably forbidden her son
(had she had any) from being with a Sickler had she been in their shoes.
A lot of reactions toward Sickle Cell Anaemia are made by an uninformed
society. A society unwilling to alter its sentiments would rather punish 55% of the population for a disease that isn’t their fault by stigmatizing them.
As though the battles we fight daily are not enough for us to contend with…
I recall a bright Thursday morning
(at @least in the hospital) like it happened yesterday and it has been 12 years
now. The nurses came to me; "Eyitayo, it's time" they said before
handing me a theatre gown. I looked at it and asked if we couldn't wait just a bit
longer, that I wanted to see my parents before going with them. I had just
turned 21 and I honestly felt like that year was going to be my last. I said a
short prayer, for my family, that HE grants them the strength to accept the
loss if the surgery went bad.
Exactly 2 months and 3weeks prior to
that, I had had my right hip replaced in the same theatre. You would think that
the surgery being successful the first time would have reassured me that everything
would be fine, but it didn’t. I genuinely believed in my heart that something
bad would happen. I had convinced myself that I couldn’t really be so lucky
twice in a row, could I? After all, what right did I have to request such a miracle from God? I stayed awake through the procedure, just as I did a few
months prior because I did not want to be sedated and never wake up. I don’t
know why it was so important to me back then, but I insisted on it. After two
hours of being in the theatre, my left leg was still being pulled. I recall
feeling a very sharp pain, as the mechanical sound of a drill made my blood
pressure rise, before calling the attention of the anaesthetist to the pain.
She gave me another shot of injection through the thin tube inserted in my
spine, and I went numb below once again. I remember looking at the time and
wondering if my fears were finally coming through. I had to ask the surgeons if
anything was wrong, and they tried reassuring me that I would be fine, in a bit
to lower my blood pressure that had spiked. A surgery that should have taken 2 hours
turned into 3, and then 4, and I remember how tired I felt. I was very weak,
with very little hope, and it felt like all I just wanted to do was rest. I recall
just wanting to sleep and really rest for the first time in almost a year of
being in constant excruciating pain; a pain I had to suck up to write my final
exams and defend my final project! It felt so good to be pain-free, so I only
wanted to sleep peacefully, and I began to. My blood pressure suddenly went
very low, and I vaguely remember the machine attached to my body screaming like
a siren. I don’t know what brought me back, but I know it was the thought of my
sister that kept me awake after that. I imagined how she would never forgive me
if I went to rest forever. I thought of my parents, and how heartbroken they would
be. So, I gave myself the courage again (as I usually do) to be strong (for
them).
At
the end of today’s event, it certainly felt like more people understand sickle
cell anaemia better now, and they sounded ready to make changes. Maybe if the
regular man resets his brain about what sickle cell anaemia is, how it feels, how to help, and especially how not to help society stigmatize them, maybe
we will begin to get it right. Approximately 5% of the entire population of the
world, has sickle cell anaemia, and 90% of that is found in Nigeria, India, and the Republic of Congo. Sub-Saharan Africa has 75% of the burden of sickle cell
anaemia in the world, and of that, 66% belongs to Nigeria alone. This alone should tell you that we have a problem and we’re still not doing something
right. We need to shine more light on sickle cell anaemia, maybe it will help
reduce the rapid increase of the burden in the country. Imagine having a well-equipped Sickle Cell Center around the State, with an emergency sickle
cell unit, where there are many qualified doctors that know how to help the
patients. If I do find myself in a position to make such things happen, I
will, and I will make the centre a blessing to the state because we would
transform the state’s image as the perfect health tourism destination for
sickle cell anaemia patients from all over the Nation, as well as entice them
with the promise of cheaper total hip replacement surgeries (and even
subsidized stem cell transplant procedures). But then again, if only wishes
were horses…
Sickle Cell Disorder has been for me, more of a strength than a weakness and although I have yearned for better health all my life, I wouldn’t have it any other way if the alternative is to go to rest permanently. However, I often weep for those that do not have the same privilege I have had, and are without the means of living as healthy a life as they can. World sickle cell day takes place annually on the 19th of June, and it has always been celebrated/acknowledged, but is it really making a difference? Are there any changes between where sickle cell anaemia was 20 years ago and this year? Is anyone actually listening to us?...
- MissEyitayo Oladejo (Sickle Cell Warrior)
