Health Stories With Hygeia HMO explores the health struggles of everyday Nigerians. We’ll share these stories regularly – they will be tragic sometimes but will always be educative.
By Okonkwor Oyor C.
This edition of “Health Stories with Hygeia HMO” was done to mark World Vitiligo Day, so, we had a chat with Ogo Maduwesi, founder of Vitiligo Support & Awareness Foundation, an NGO that works on improving the wellbeing of people living with Vitiligo in Nigeria and Sub-Saharan Africa. Enjoy.
Vitiligo is a disease that causes parts of the skin to lose its color. It occurs when pigment-producing cells (melanocytes) die or stop producing melanin — the pigment that gives your skin, hair, and eyes color. It affects up to 2% of people worldwide. The causes are unclear but it may be related to:
- A trigger event, such as stress, severe sunburn or skin trauma, such as contact with a chemical
- Family history (heredity)
- A disorder of the immune system (an autoimmune condition)
What’s your favorite childhood memory?
(Laughs) I was a hyperactive child and I was always in trouble for something. My mum was very strict and interpreted my hyperactivity as rebellion. So, she was a bit hard on me.
Here’s a story – I was helping out in her provision store as usual when I decided to steal a tin of margarine. To avoid getting caught, I finished the entire tin with a loaf of bread in one go. I started feeling strange soon afterward, I was spitting and vomiting. I felt so weak, I couldn’t stand anymore and thought I was going to die.
My mum came in and knowing the kind of child I was, asked me to confess my sins instead of rushing me to the hospital immediately. (laughs)
It all seems so funny now in retrospect.
You were mischievous!
Oh yes, I was!
So, what did you think you would become when you were younger?
I always thought I would be an influential businesswoman that will change how a lot of things are done.
How is it different from what you do now?
The difference is that I am not a successful businesswoman yet. But I am still on the path.
Life happened and I also now work in the non-profit sector, impacting lives positively even with a shoestring budget and difficulty in paying bills.
Can you tell me about when you first learned about Vitiligo?
I learned about it first in February 2005.
It started with a spot on my lip that kept spreading. After the drugs my doctor gave me failed to stop the patches from spreading, I spoke to my cousin’s family doctor and he told me to read up on ‘Vitiligo’.
After reading up, I rejected it as a typical Nigerian. But rejection did not chase the Vitiligo away. Eventually, I went to the hospital and I saw a dermatologist who confirmed that I had vitiligo.
How did you feel?
I didn’t feel any different because I thought, at first, it was one of my numerous strange reactions. I ignored it while I expected it to go away like the reactions often do. I soon started to look for others like me to share the experience with. This is how I learned to reclaim my confidence which I had lost while coming to terms with living with Vitiligo.
Tell me about your family
I come from a regular Nigerian family. My parents and my siblings (very funny bunch). I have 5 siblings and I am the second child. The Ada as well (the first daughter)
How do you think it affected your family?
Very negatively in every way at first. It was not funny to them at all even when I was struggling to live my normal life at the peak of it. I remember my siblings always trying to avoid eye contact when we talked then. My vitiligo was strange to them and they struggled with understanding it.
My dad found it difficult to accept my desire to become an advocate for vitiligo at first. He thought I needed to be shielded, not out there talking about vitiligo. But he is now my biggest fan. My family has learned to live with and accept my vitiligo. It is basically non-existent to them and they don’t treat me specially. Same with my nephews and nieces.
Have you ever felt discriminated against or stigmatized?
Yes, I have experienced discrimination and stigmatization. People stare and treat me differently because of my skin.
Something about experiencing discrimination makes you see it even when it doesn’t exist in a situation. This tends to happen to people who experience stigma a lot.
Still, it doesn’t change the fact that the stigma and discrimination till date is heartbreaking.
What are the challenges of living with vitiligo in Nigeria?
Some of us have struggled with romantic relationships because of vitiligo. Others have not been able to find jobs because some employers do not understand what vitiligo is. Even using public transport can be challenging. People sometimes refuse to enter a bus when we are in it! I believe that this happens because many people think vitiligo is contagious.
What are the common misconceptions about vitiligo you know?
There are many myths people believe:
- Some think that it is the anger of the gods.
- Others say it happens when we eat food forbidden by our family tradition, for example, some Yoruba people believe that you get vitiligo if you drink palm wine when your family forbids it.
- There are people that believe the appearance of vitiligo is nemesis catching up with us.
The list is long honestly.
What would you like to see change about how vitiligo is viewed in Nigeria?
We need to intensify Vitiligo education, enlightenment, and awareness.
When people understand the condition, the challenges, and the fact that those living with it didn’t bring it upon themselves in any way, the intolerance will reduce. It is also important for the public to learn that it can happen to anyone anytime.
Have you ever felt overwhelmed by everything?
Yes, I do! I am human after all. The stress of running an NGO, especially the lack of resources when you have many projects you want to execute, can be overwhelming. I have even reached a point once when I asked myself ‘who sent you this message, Ogo?’
Sorry to hear that, you are doing a good job…What do you do daily to maintain your health?
I am on a journey of healthy living. I am a natural food enthusiast, my antioxidants and phytochemicals from natural fresh foods are non-negotiable! I frown at processed foods. I love to walk, I once walked 27 km at a stretch! I also exercise at home.
If you could address the world, what would you say?
Be kind because until you walk in an individual’s shoes, please keep your opinion, assumptions, and conclusions to yourself. What you see is not always as simple as it looks.
Be You on Your Terms!
This includes however you want or are comfortable managing your life and challenges. No one else knows the right way to Be You!