In Texas, September is dubbed the national sickle cell awareness month, and that goes to show how important conversations around it are all over the world. Sickle cell is an inherited blood disorder marked by flawed haemoglobin. This is the protein in red blood cells that carries oxygen to tissues. As a result, sickle cell disease leads to decreased oxygen delivery to the tissues.
Miss Monalisa Airhunmwunde, a graduate of the University of Benin, is one of the many sickle cell warriors in Nigeria. She studied Accounting, enjoys reading books and watching movies. In this piece, she shares with us some of the challenges she faces as a sickle cell warrior and their impact on her family and romantic relationships.
Hi Monalisa. When would you refer to as the happiest period of your life?
I think I was happiest during my university days. For some reason, I rarely broke down, and during that period, I also had really good people in my life.
They were always there. I mean, for everything. During good times as well as during times when I was struggling health-wise.
I had people who didn’t judge me based on my health issues but treated me like I was okay without any sort of discrimination.
What was growing up with sickle cell like?
Growing up wasn’t easy, to say the least. I lost my dad when I was 7, and he was my everything at that time.
During my hospital stays and every crisis episode – he was there through it all. After my dad died, it was just me and my mom. It wasn’t easy. My mom did her best, but it was tough. The financial and emotional burden was a lot too.
Hmm… and did it get better from then on?
Growing up, I think it got worse. The financial burden is worse with little to no help.
How would you describe the state of sickle cell management in Nigeria, considering how our health sector and economy are?
Living with sickle cell in Nigeria is a lot. From the lack of proper healthcare to what I am, sometimes, constrained to call the lack of qualified personnel to handle patients.
I mean, it took almost 2 years for my doctors to properly diagnose that I had a complication called avascular necrosis. They were just speculating until it got so bad, I couldn’t walk properly.
Also, there is a situation where the pain is underestimated. Even our drugs appear to be substandard. I had a friend, God rest his soul, who was a warrior too.
His sibling brought his drugs from the United States, and he’d sometimes share them with me. He gave me a painkiller that was like regular paracetamol, and one time, I was having a crisis so severe that nothing was working. Not even the supposedly strong injections. I took those tablets, and in minutes, I felt better.
Do you think this condition affects your relationship with friends or romantic partners?
Oh, yes it does. Honestly, with romance, I was lucky. All the men I was with didn’t really bother about it and were with me through it all.
The problem was with their family. One mother literally told me that her son didn’t have any use for a “sickler.” Then another said they couldn’t let their brother marry me with my condition.
I have also had situations where friends treated me well when they weren’t with other people. Once we are in public, I am treated as the reject. I have had situations where my friends will say ‘oh you can’t come abi. You are sick again.’ I am good with masking pain really. I mostly just laugh it off.
And what is one question people always ask you?
‘Why do you still fall sick? I thought people outgrow sickle cell.’ I get really pissed off because a lot of people know little or nothing about this disease but would never accept their ignorance.
As it is sickle cell awareness month, what is one message you want people to know?
Know your genotype before you get married. I can’t overemphasize this enough.
Also, having sickle cell isn’t the end of the world. It is challenging, yes. But with proper management, you can achieve just about anything.
Recent Post
Gallery
Featured Videos
