I am Yasmine Ponle Okudzeto, a 37 year old Muslimah, an entrepreneur, a mother and a sickle strong warrior.
Today, 19th June is the World Sickle Cell Day and it is my hope to create enough awareness about Sickle Cell.
I was diagnosed with sickle cell anemia when I was threeonths old and since then my life has been a roller coaster of pain agony and frustration. It is always been my dream to spread the awareness of sickle cell, educate people living with the condition and to create a support network for caregivers and parents of young warriors.
What is sickle cell anemia?
The term sickle cell disease (SCD) describes a group of inherited red blood cell disorders. People with SCD have abnormal hemoglobin, called hemoglobin S or sickle hemoglobin, in their red blood cells.Hemoglobin is a protein in red blood cells that carries oxygen throughout the body.
How do you get sickle cell?
People who have SCD inherit two abnormal hemoglobin genes, one from each parent. In all forms of SCD, at least one of the two abnormal genes causes a person’s body to make hemoglobin S. When a person has two hemoglobin S genes, Hemoglobin SS, the disease is called sickle cell anemia. This is the most common and often most severe kind of SCD.
Hemoglobin SC disease and hemoglobin Sβ thalassemia (thal-uh-SEE-me-uh) are two other common forms of SCD.
Aside from the types of sickle cell you have various levels of it as well. We have some warriors who are silent sicklers this means the hardly or never get a crisis, then you have the chronic sicklers who are constantly in and out of hospital with a sickle crisis or one complications or another.
What is a crisis?
Imagine you accidentally drop something into the sink. If it’s small stone or button, it’s not an issue. You let the water run and flush it through. But if your kid slip a big piece of Lego or a large stone down the drain, you’re going to have some bigger problems when it gets stuck in your pipes.
That’s kind of what happens during a sickle cell crisis. Red blood cells are usually round and their shape enables them move easily throughout your body. But when you haves sickle cell disease (SCD), some cells are curved — like a sickle–and hard. They don’t flow as easily, and they can get stuck in the small blood vessels of different parts of the body that’s when you get a sickle cell crisis.
How has sickle cell affected my life?
My earliest recollection or understanding of sickle cell was when I was about six years old. I was living in Accra New Town with my grandma, uncles and aunty. What I remember was this pain, really bad pain, and I woke my grandma (may Allah Rest her soul) up and she massaged the area with Rubb and a hot towel.
I don’t recall the time but I remember it was in the middle of the night. By morning the pain was still bad so I was taken to the Korle Bu Teaching Hospital by my uncle. How long I stayed there I don’t remember fully but I remember the drips and medication.
I remember my 10th birthday party planning. Oh I was so excited but guess where I spent it, children’s ward in Korle Bu. I had the party on the ward with all the kids on admission. It was ok but I was sad that my friends from school could not join me.
Not long after that I watched the little mermaid cartoon and Ariel the mermaid sung a song that touched me so much I cried. The song basically talks about her feeling trapped in the sea, wanting to explore land and walk on her two feet. I felt the song described how I felt.
In my very young year, I felt trapped in the sickle body that always betrayed me with pain; I wanted to run at Physical Education (PE) without getting tired or feeling pain. I wanted my body ulcers to go so I could stop being talked about in school or feeling so self-conscious. I was tired of being in the sick bay all the time. I was tired of being called the ‘Sickler’.
I was only 10 years old and I was depressed without even knowing it. By the time I was a teenager I was self-conscious and frustrated with this body, I always dreamed of a life where there was no sickle and I was free from pain.
I was very friendly but covered my insecurities by pretending to be confident and strong. This continued to my early twenties when I moved to London. When I got to London I rebelled, my family though I was rebelling against them, but what they did not realize was that I was rebelling against sickle cell, by wearing reveling cloths in winter and by drinking so much alcohol. Each time I did any of these my body also reacted and go back into crisis.
When I first left home to the university, I bought a lot of alcohol and would drink from morning till dusk. I will say to myself why not? Afterall there is no family to stop me and whatever I do sickle cell will hit anyway so I might as well have fun. But my body always retaliated. Clubbing was another thing I loved doing but, drinking, dancing and sweating makes me dehydrated. Dehydration, combined with little cloths in winter only meant one thing: crisis.
There was a day I went clubbing and told my friends that when we finish clubbing I was to go to the hospital. They were so worried they wanted us to leave immediately. I refused and insisted we will go when we were done. I did not leave till four hours after my crisis hit. I was so drunk when we got to the hospital that they could not give me any painkillers. They had to pump my stomach and hydrate me by giving fluids transfusions till the alcohol was out of my system. Oh the pain I endured that day.
I moved back to Ghana at 29 and I was still rebelling, I partied so hard and drunk so much I ended up being sick for 10 months. What killed me during those 10 months of being ill was the pain I caused my mother. Oh my God, I will never forget it.
Sickle cell has taken me to the brink of insanity and back, it has kicked me so low I have wished for death sometimes. It has pushed me so far I have shut everyone out of my life.
My close calls with death and operations
- Gallbladder removed in 1994
- Heart stopped in 2004
- Hospitalized for 10 months in 2010
- Almost lost my life having the child doctors said I could not have (story for another day) in 2014
- I was sick for most of 2016 and was in a wheel chair by the time I was leaving Ghana for my hip replacement.
- I have battled pain killer dependency which almost killed me.
My life has not been easy but I am grateful to the Almighty Allah for blessing me with such an amazing support network. My aunties, uncles daddies, siblings and friends have been phenomenal in always being there.
But most importantly I praise Allah for blessing me with an amazon for a mother. She will go to the end of the world for me. She has been my legs when I could not walk, my eyes when I have been blinded by painkillers and my strength when I have been weak.
The voice of Sickle Cell
I go in and out of depression which is only normal, they say with chronic illness, I may battle depression for the rest of my life but one thing I know is that I want to use my sickle journey to help others.
I want to be the voice of sickle, I want to motivate and help the sickle youth so they don’t go through what I did. Yes, crisis will come, infections and complications will hit but if there are people who are going through pain, I want to be there for them, counsel them so they make better choices than I made.
Sickle has taken so much from me, it has taken men I loved away because they were AS, it has taken job opportunities, it has crippled me financially and so much more.
But what sickle has given me is strength unimaginable strength and determination to live and achieve against all odds. It has given me a strong sense of empathy and willingness to always help others.
I am launching a foundation called SICKLE STRONG WARRIORS FOUNDATION in September, the sickle cell awareness month. This foundation is being launched by my close friend Sandra Don Arthur of Alexandrina Makeup Artistry and I. Sandra is a warrior mum with two warrior kids.
It is our dream to make a difference in the sickle community not on in Ghana but in Africa as a whole.
On this day, World Sickle Cell Day, I will like our unmarried youth to BE SICKLE SMART, BE SICKLE AWARE and BE SICKLE KNOWLEGEBLE. Please know your genotype before bringing a child into a lifetime of pain and agony.
The writer Yasmine Ponle Okudzeto is an entrepreneur, a mother and a sickle strong warrior. She can be reached at email@example.com and +233 504714901, +233 204003768