STORY BY GRIFFINS WALUBOKHO
Red blood cells have the important job of delivering oxygen throughout the body. When a person has a sickle cell disease, their red blood cells are a sickle-shaped and don’t move through blood vessels as easily as normal red blood cells, which are rounder and more flexible. This leads to painful crisis by sickle cell patients among other complications.
I was diagnosed with Sickle Cell when I was just 7 months old twenty-six years ago. These news not only brought painful emotions to my parents but the pain is what I would soon learn to live with. It’s been a long journey ever since.
I vividly remember friends to my parents who would suggest herbal medicine and some would even suggest special spiritual interventions claiming that my condition is as a result of being bewitched which is false. However I tried treatment with various herbal medicine but they were all in vain as we soon realized.
AGE THREAT SUPERSTITION
Forget about the painful crisis attacks, the most painful thing I lived through in my childhood was the frequent scaremongering by ignorant people who would tell me that I would grow past certain ages which I’ve joyfully grown past into adulthood.
One of the most painful memories I have though is back in my teenage years when I was taken to hospital with Severe anemia and malaria and the health providers at the facility asked my parents to go and start preparing for my funeral. I’m happy one nurse believed that I would not die and she did all she could to ensure I stay alive. I will forever be grateful!
FAMILY AND FRIENDS
Growing up wasn’t easy. I had to give up a lot of fun moments as I couldn’t physically participate in most of the childhood and teenage indulgences. I am grateful my parents ensured that I was aware of my condition and always gave me explicit instructions on my limits.
Like every other sickle cell patient in the world, I needed to be surrounded by people who loved and understood my condition. My parents were my greatest support. I remember countless nights where they would keep vigil when I was in a crisis and doing all they could to kill the pain and make it bearable while they managed it.
My siblings were ever amazing always there, I remember staying in Hospital for over a month with my sister Grusha because I couldn’t recognize any other person not even my parents. My friends would always understand when I turn down their exciting plans and are ever there just in case I get a crisis attack. My school mates also supported me through my studies living with an empty desk in class most of my schooling years.
Work places are known to be the most stressful to most sickle cell patients with most employers avoiding to recruit sickle cell patients. All the places I have worked has been a great blessing as I got understanding colleagues and bosses. My three years at BRITAM were an awesome experience – I never got segregated or harassed because I was a sickler.
Currently working for the Office of the First Lady – Bungoma County is the best experience as I found a new family here. Because of the peace of mind I’ve gotten working with the office, I have only had a crisis once in the last two years.
BACK TO THE COMMUNITY
Today, I live to ensure that parents who get children with sickle cell anaemia understand and accept the situation and give the best care that child could ask for. I live to ensure that no person’s spirit is broken by ignorant people predicting their death.
I live to ensure that the Kenya care system works for the best to ensure that sickle cell patients get quality care. I live to ensure that the communities across the globe are more aware of sickle disease and are able to interact with sickle cell patients with dignity.
I live to ensure that employees give sickle cell patients a conducive working environment. I live to ensure that everyone knows their sickle cell status and plan with partners before marriage. Most importantly, I live to ensure every sickle cell patient lives a quality life and can access affordable quality health care.