Living with Sickle Cell Disease – Fadeelat Adeyemi (Survivor) shares her story.
Most of us know at least one person living with Sickle Cell Disease and do we talk about it with them? No. We tiptoe around them. Some of us don’t even know SCD and few of us live with SCD.
Here’s a life story of a Survivor which will make you see from a concerned and enlightened perspective.
Before you continue, do you know your genotype?I hope it’s a yes!
Here’s her story;
I am Fadeelat Adeyemi. I am 24 years old.
I am from a family of 5, the second child/daughter and the only sickle cell patient in the family.
I was diagnosed of Sickle Cell Disease (SCD) when I was 1½years old, so I can say I have lived with it all my life.
I am involved in volunteering and humanitarian activities. I’m a member of Drug free club OAU(Obafemi Awolowo University) Ile Ife , Sickle cell club OAU , ANUNSA OAU, also in a few support groups beyond the campus.
Oh yeah! I am a student of the Pharmacy School at Obafemi Awolowo University Ile Ife, Nigeria.
My mum is a nurse and my dad an engineer. You may wonder why someone in the medical line would give birth to one with SCD. I also wondered the same and I had to ask questions.
As I was told, my mum had her Genotype test in the course of her tertiary education even before she met my dad, she was told she was AA. She never bothered again, thinking she’s compatible with anyone.
It was after I was given birth to, and started to have crisis about a year old that they had my Genotype checked, and it was discovered that I’m SC.
They had to check theirs again and my mum was found to be AS and my dad, CC. Apparently, there had been a laboratory error in the previous genotype test she had.
Ever since, it has become the responsibility of everyone in the family to manage the disease.
When did you realise the implication of living with SCD?
I can’t really say. It’s something that I have always known subconsciously, even while I was growing up.
The fact that it brings me pain physically and psychologically such that I’d have to be isolated in a way. I couldn’t do the things my siblings did, I couldn’t join friends and colleagues in some activities. I have always been overprotected but then I didn’t understand, I only perceived it as punishment.
As I grew up, I learnt more about it and the implications by asking questions and later reading about it.
My mates envied me because it felt like I was always favoured among peers, but I never wanted that.
What did you want?
I wanted to do things my own way without having to watch my back to see if crisis was at the corner.
I would love to do things without having to choose between my health and the other things I need to do, I love to do and I’d want to do.
I want to be free.
Hmmn… Has this reality influenced your choices in life in anyway?
Yes. It influences every of my choices.
Can you give examples of the main ones?
Hmmn… Let me say my career path that is, Pharmacy. I learnt about the profession at the age of 7 (maybe before), and that was because drugs are all I have known my entire life.
I live on them and wondered how they work, and what makes them different from chalk.
I wanted to put a stop to Sickle cell, I wanted to find a cure to it, hence my choice to study Pharmacy.
What’s your philosophy about life?
My philosophy about life is making impact, no matter how little.
I live everyday hoping to see another, but at the same time, it’s all about making good impact in the world.
What’s your greatest challenge so far?
My greatest challenge is choosing between my health and living. I try to put my health first most times, but making those sacrifices of letting go other things that may affect it, is really a challenge.
How do you select or choose ?
It is really difficult to do, but most times it depends on my state of mind. And when I overdo it, crisis is there to restore my mind to factory settings.
Sometimes I tell myself,
“It’s only the living who perform and take the glory ” Other times I tell myself “what’s the essence of being alive (existing) without living life”.
Also, I have friends and family who watch out for me, and caution me. At times, I yield, and other times, I don’t. Oh yeah! I face the consequences of each of the choices I make at the time.
What are the things you would really like to do?
(given no restrictions)
I would like to travel around, do more of volunteering, concentrate and focus more on academics.
Just live a normal life like everyone else without watching my back.
What keeps you going? (or content)
Most times, my mum’s struggle so far. Her words of encouragement. I love her so much.
Knowing you might not be able to do some things… How do you deal with the feelings?
I deal with it by making the little things I can do count.
Do you think people understand how to relate with people living with SCD ?
(How do you think we can do better?)
Very few people understand, and yes, there’s room for improvement.
But do I blame them, No. Even those of us living with SCD are still trying to learn and comprehend how to live with ourselves.
Can you give examples on how best to do this?
I think it still falls back on the individuals with SCD, but there are some general things I have noticed peculiar to us.
Most survivors/warriors don’t like to be treated differently, whether favored or otherwise. It feels like a form of discrimination.
Most are hardworking and like to prove it, and wouldn’t want to ask for help even when it’s needed. I’ll say, know when to offer help but don’t overdo it.
In addition, nobody likes to be sick, so there are statements and actions which come off as insensitive and could really hurt. I’d advice that before you make any statement especially when in crisis, ask yourself how you would like such. More like put yourself in the survivor’s shoes.
Note that sickle cell patients are referred to as “Survivors” and “Warriors” because we feel we survive every single day which makes it count, and we keep fighting to see another day.
There are also some other words which may mean nothing to others, but may be offensive to individuals due to their experience.
Can you remember any you experienced?
While I was growing up, I used to hate the statement “how are you?”, especially when it’s said in Yoruba ‘Bawo ni?’ or ‘Bawo lara e?’ Because I felt they are asking something else.
But now, I’m cool with it, I see it as a greeting and that they mean well now.
Also, when one is sick, it is irritating to the ears of every survivor, no matter how unconsciously it is said.
You mean, “How are you doing?”
No, I mean when one says they’re sick and the response comes as “Again!” or” Ki lo tun se e? ” (what happened again?). The word “again” should be avoided as much as possible in conversations with survivors when referring to the sickness.
What are the things the SCD has cost you?
It’s the only life I have known so I try to fit into it. I sometimes imagine what and where I would be without SCD, but I don’t like to dwell too much on it, because only God can say. I might have turned out worse or better, can’t say.
What about relationships, achievements?
Relationships… I will say it sends the ones not meant for me away. It’s one of the things I talk about before even developing feelings, so it saves me from heart break in a way.
Achievements, mainly academics. Medical reports have always been my way out since primary school. There’s hardly a year I don’t miss out on exams/tests. I’ve always had make up exams right from secondary School.
Are you in any relationship(romantic) now?
He has refused to tell me his genotype since he has had the test so, I’m kind of a leg in, and the other out.
What are your aspirations in life?
My aspiration is to be successful in my chosen field. I also dream to be part of the decision makers politically to shape the world.
Speaking of the crisis, what triggers it?
What triggers the crisis varies in individuals: it includes stress (physical, emotional or psychological), malaria, extreme temperatures either too cold or too hot, infections etc. It can be any or a combination of any of them.
Can you recollect your worst crisis?
I won’t call the most painful as worse, I will say the silent crisis are the worst.
One of such was in 2014, the only symptoms was tiredness, not knowing a lot was going on and my spleen was really destroying my red blood cells. Upon medical examination, it was discovered that my PCV (blood level) kept dropping.
That to me, was one of the worst, as I could have been dead without any “big” symptoms.
Can you relay the most thoughtful things people have done during your crisis?
There are so many thoughtful things people have done during crisis especially my friends who are also students. Creating time to be there for me despite the busy schedule on campus, is so thoughtful.
Whose life gives you inspiration?
The life of Late Prof Dora Akuyili, and the life of Alhaja Asiata Onikoyi (the oldest human living with SCD). She’s over 90 and still so agile.
Observing all you do I can’t help but ask you, do you wish there are some considerations in the system for sickle cell patients? (like an elastic measure in seemingly rigid systems)
Sometimes the selfish part of me wishes for that. But in the real sense, No. That would be a form of discrimination.
What message do you want out there as regards SCAM( Sickle Cell Awareness Month)?
I implore everyone to know their genotype, reaffirm it, and confirm it.
No excuse will be tenable to the future generation for putting them in pain.
Also, be informed about SCD. Make informed decision when choosing spouses, and analyse the cost of your decision.
What would you like to tell survivors?
They should never give up. They should keep fighting and keep living.
We hope this story has encouraged and enlightened you in whatever form to lead amazing lives.
Feel free to share your experience and lessons as a Survivor or as one who knows one in the comment section.