Tell me about your childhood
My childhood was pretty normal in retrospect. I did things other kids did and I played a lot.
I used to say I was a ‘boy’ because I was the only girl in the midst of two boys. So, I didn’t want to be different. I was pretty rough and got injuries and scars from either playing football or wrestling with my brother.
Can you tell me about when you first learned about your condition?
I noticed that every time I bent down around age 6 or 7 that I heard a crack from my joint and I asked my mum about it, she always said that it was a sign that I was growing. But I felt weird because my brothers didn’t hear the sound when they bent. So I was curious.
I also noticed that my eyes and teeth were yellow, so yellow that a female cousin told me not to smile and show my teeth. I took this advice seriously and was ashamed of my teeth. The tooth discoloration was a result of getting antibiotics as a baby; I think it was tetracycline). Luckily for me, my milk teeth fell off, and the new ones that grew were crème not yellow so yes I started smiling again.
I learned about my genotype at University during my medical registration. When I saw the result I argued that my blood samples must have been swapped because in my secondary school I remember I did a test and gave me a card saying I was AS and O+, so they retook my sample. I waited patiently till the result came and it was still SS, O+. Bang! Right there and then I had my first ‘known’ crisis, my whole body ached and my mum had to come to pick me up and take me home, where she had some explaining to do.
That must have been tough… How did it make you feel?
I felt TERRIBLE! Like it was a death sentence, I was angry! Then I started remembering instances of previous illnesses, how my mum used to tell me not to stress myself and prevent me from doing some chores. It all started to make sense. After about a week of sadness, I went into denial, I kept telling myself and whoever asked that I was AS luckily for me I barely had crises. Then I got to my 20s and all hell let loose. I had 3 hip replacement surgeries within 4 years, it was crazy! Going from healthy fun-loving, good vibes to quiet and self-absorbed. I went through a lot!
I am really sorry about this.
Thank you.
So, how do you view sickle cell disease now?
Oh now, I see it as a part of my life, a cross to carry, like a late friend of mine would say, ‘Pain is an old friend’.
Have you ever felt discriminated against or stigmatized?
Definitely there’s a lot of discrimination and stigmatization we face daily, with the subtle way people say things like, ‘ You know with your condition, you shouldn’t do this or that, or with your health status don’t wear this or that’. People seem to be showing concern but deep down it is breaking you inside being referred to as someone with a CONDITION.
I get this, you are more than a diagnosis.
Yes.
Ok, can you tell me about your family?
My family…
Hmm… I lost my dad 2 years back, so now it’s just my mum, my 2 brothers and I.
Sorry for your loss.
Thank you.
How do you think it affected your family?
My mum is always scared because of my history of going from being fine one minute to being on admission the next minute. My eldest brother understands me while my immediate brother struggles with the fact that his former partner in crime and wrestler is now one with hip implants. I don’t think he fully understands it yet. My late dad cared in his own way but it was very hard on him watching me go through pain and surgeries, it affected his health.
What would you like to see change about the plight of sickle cell warriors in Nigeria?
In Nigeria, hmm… A lot of work needs to be done. Starting with immediate response to patients, not to be asking JAMB questions when one is in chronic pain, making sure the complaint is minimal first before doing paperwork. Also, teaching the health workers that every sickle cell patient is unique and different. What works for A will not work for B. So each individual should be managed uniquely.
Also key is ruling out the idea that a patient is an addict because they know exactly what medication works for them. A lot of us have learned over the years and are more experienced with pain management than some doctors.
There’s just a lot that I fear I would be exhausted if I continue speaking
Was there ever a time you or your parents struggled financially because of this?
A lot of times we had to ask for financial assistance especially when I had to do the revision Total Hip Replacement. It’s not been easy ever since.
What do you do daily to maintain your health?
I try to rest as much as I can since I have difficulty sleeping. I hardly sleep so I rest more and try to eat healthily and stay hydrated and work out a bit.
Any plans for a family in the future?
Oh yes, I want a caring husband and 2 amazing and healthy kids.
What is your philosophy of life?
I like a Gandhi quote that says: ‘It is health that is the greatest wealth not pieces of gold and silver’.
Live in your own time zone, it is when you start comparing your life that you become less grateful because a lot of people won’t survive what I’ve been through.
Why did you decide to share your story?
I decided to share my stories to encourage others that there is hope and that you can redefine yourself to a better version of you rather than give up and call it fate.
What would you like to say to young people living with SCD?
To young warriors, the sky is your starting point. Always remember to stand up, dust yourself and continue after a fall, I’ve had 3 major surgeries but I’m not giving up on myself and so you shouldn’t either.
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Tetracycline: This is an antibiotic and children younger than 8 years old may have their teeth stained by the drug.
Milk teeth: The first set of teeth a child grows, found in children between 0-12 years
Genotype: the genetic makeup of an individual with reference to a specific trait or set of traits. In this case, the sickle cell trait: AS – AA – SS – SC
Blood Group: the various types of human blood with specific traits that determine compatibility in transfusion. The best-known system is the ABO system.
What Is Sickle Cell Disease (And When Do I have It?)
This refers to the presence of a group of inherited traits that shorten the lifespan of red blood cells and cause them to contort into a sickle shape, causing a shortage of healthy red blood cells (anaemia) and blocking blood flow which causes pain (crisis). It is the absence or partial presence of normal hemoglobin, an agent in the blood that is responsible for carrying oxygen.
People with this disease often complain of pain in the bones or joints, sudden chest pain, dizziness, fatigue, and shortness of breath. They are also prone to infections because an organ in their immune system- the spleen, does not function properly.
Sickle cell disease is often diagnosed in during infancy or early childhood as this is the period some of the symptoms like swelling of the hands and feet along with a fever begin to manifest. Below are the various genotypes with the sickle cell disease. People with these traits have varying degrees of the disease.
· SS
· SC
· Sickle Beta-Plus Thalassemia
· Sickle Haemoglobin D Disease
· Sickle Haemoglobin – O Disease
While people with the AS genotype have the sickle cell trait, those with AC genotype have the Haemoglobin C trait. Both lead to sickle cell disease when there is a union with someone with the sickle cell trait. Hence, procreation between people with the above genotypes is not encouraged.
By Dr.Okonkwor Oyor C.
