The Journey Of A Sickle Warrior

Yasmine Ponle Okudzeto is a 37-year-old Muslimah, an entrepreneur, a mother and a sickle strong warrior.

Jasmine was diagnosed with sickle cell anaemia, a group of inherited red blood cell disorders, when she was three months old and since then her life has been a roller coaster.

People like Yasmine with SCD have abnormal haemoglobin, called haemoglobin S or sickle haemoglobin, in their red blood cells. Haemoglobin is a protein in red blood cells that carries oxygen throughout the body.

People who have SCD inherit two abnormal haemoglobin 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 haemoglobin S.

When a person has two haemoglobin S genes, haemoglobin SS, the disease is called sickle cell anaemia. This is the most common and often most severe kind of SCD.

Haemoglobin SC disease and haemoglobin Sβ thalassemia (thal-uh-SEE-me-uh) are two other common forms of SCD.

Aside the types of sickle cell you have various levels of it as well.

There are some warriors who are silent sicklers, this means they hardly or never get a crisis, then the chronic sicklers who are constantly in and out of hospital with a sickle crisis or one complications or another.

Red blood cells are usually round and their shape enables them to 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 one gets a sickle cell crisis.

World Sickle Day
June 19 is the World Sickle Cell Day and it is used by stakeholders in the health sector to create enough awareness about sickle cell management and prevention.

The World Health Organisation (WHO) estimates that five percent of the world's population has the trait and over 300,000 babies are born annually with haemoglobinopathies (mostly sickle cell disease and thalassemia).

Current statistics show that the prevalence rate for sickle cell disease in Ghana is about 25 percent and an estimated two percent of births, amounting to approximately 15,000 babies are born with the disease annually, due to low awareness on knowing ones genotype before couples decide to have babies.

The day is, thus, used to heighten awareness creation among key populations while the month of September gives stakeholders the chance to organise activities aimed at public education on the disease.

Yasmine's Story
It has always been Yasmine's 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 through her story.

“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 aunt. 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 Robb 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,” she says.

Yasmine as little as 10 years felt trapped in the sickle body that always betrayed her with pain. She says her condition prevented her from doing many things as a child in school.

“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,” she says.

Although very friendly, Yasmine covered her insecurities by pretending to be confident and strong, this continued to her early 20s when she moved to London. Yasmine decided to live all out, according to her, whatever she does sickle cell will hit anyway.

“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? After all, there is no family to stop me but my body always retaliated,” she adds.

Yasmine moved back to Ghana when she turned 29 but 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,” she indicates.

Near Death Situation
Yasmine says sickle cell has taken her to the brink of insanity and back, it has kicked her so low she had wished for death sometimes and it has pushed her so far she had to shut everyone out of her life.

These were the instances; she had her gallbladder removed in 1994,  her heart stopped in 2004 during a crisis, she was hospitalised for 10 months in 2010 and she almost lost her life having the child doctors said she could not have  in 2014.

“I was sick for most of 2016 and was in a wheelchair by the time I was leaving Ghana for my hip replacement. I have battled painkiller 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 aunts, uncles, daddies, siblings and friends have been phenomenal in always being there,” she says.

The Voice Of Sickle Cell
Yasmine goes in and out of depression which is only normal, with people with chronic illness.

However, Yasmine has decided to use her voice to help others going through the same situation.

“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,” she stresses.

She says having the sickle cell condition has taken so much from her but she believes she had gained 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,” she says.

Sickle Foundation
In order to help more people with sickle cell live more comfortably with the disease, Yasmine will be outdooring a foundation called SICKLE STRONG WARRIORS FOUNDATION in September, the month of sickle cell awareness creation.

This foundation will be launched together with her close friend, Sandra Don Arthur of Alexandrina Make-up Artistry, a warrior mum with two kids with sickle cell.

“It is our dream to make a difference in the sickle community, not on in Ghana but in Africa as a whole,” Yasmine mentions.

On this day, World Sickle Cell Day, I will like our unmarried youth to BE SICKLE SMART, BE SICKLE AWARE and BE SICKLE KNOWLEGEABLE. Please know your genotype before bringing a child into the world.

Yasmine Ponle Okudzeto is an entrepreneur, a mother and a sickle strong warrior. She can be reached at [email protected] and +233 504714901, +233 204003768