Feature Article of Mon, 19 Jun 20173
The telling journey of a Sickle Strong Warrior!
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 three months 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.
Yasmine Ponle Okudzeto during the treatment phases
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.
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.
Yasmine Ponle Okudzeto after surviving the trauma
My close calls with death and operations
• Gallbladder removed in 1994
• Heart stopped in 2004
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.