Alopecia, a rare condition that develops when the immune system attacks the hair follicles and causes hair to fall out in small patches, affects about 147 million people in the world. Although there are no statistics that show the number of people living with alopecia in Africa, research shows that many middle-aged African women suffer from alopecia areata, a condition that causes round patches of hair loss. For some, the causes have been associated with harmful hair-care practices.
Alopecia can occur at any point in time, irrespective of a person’s age or gender, and can sometimes lead to partial or total loss of hair on the scalp. In some cases, this loss of hair occurs throughout the entire body: scalp, eyelashes, eyebrows, armpits, legs, and so on. This is called Alopecia Universalis (AU).
According to Africa Prime News, there are over 100,000 persons living with Alopecia in Nigeria, many of whom could not diagnose their symptoms early. One of such persons is Tolulope Jasmine Oguns, the Founder of Heroic Alopecia Foundation.
Like an average Nigerian who believes cutting their hair will make it grow more evenly, when Jasmine started losing her hair in patches 15 years ago, she decided to take it all off thinking it would grow back eventually. That was the end of her hair growth.
I was so ignorant of what my condition was for 10 years until I decided to do personal research in 2015 and I discovered it has a name, alopecia, and I wasn’t alone.
Jasmine was not the only one that was ignorant of what her condition was, “My family was as scared and ignorant as I was, and they did their best to hide it, which I was comfortable with then.”
For a disease that is not so easily diagnosed in Nigeria, and does not have readily-available treatment options, it is of little wonder that Jasmine did not get the necessary medical care she needed. “I saw a general practitioner and I got diagnosed wrongly. I was placed on medication that affected me physically and physiologically. Treatments for Alopecia aren’t readily available for those that have it in Nigeria, especially if they are low class because, surprisingly, most doctors don’t even consider it when diagnosing. Being referred to a dermatologist isn’t guaranteed except one gets lucky and they are not available in every general hospital,” she says.
When it comes to health issues for many Nigerians, it’s either physical – i.e the doctor can diagnose and give medication, or it is spiritual – i.e, village people are at work. Whichever one it is, the bottom line is that if medical practitioners cannot find a solution to our ailments, we take a step further to seek solutions. Jasmine’s family “thought it was a spiritual attack and we spent years looking for solutions medically and using traditional medicine.”
Living with a rare ailment is not easy to deal with. It is worse when there seems to be no solution to your problems. “Losing my eyebrows and eyelashes was the worst. I can’t leave home without making sure I draw my brows. Sometimes, I have to use wigs even when it’s uncomfortable. It is pretty difficult to live with.”
Living in a very conservative society like Nigeria, drawing her eyebrows and wearing wigs were not the only problems Jasmine had to face. “Most people wonder why a girl would want to shave off her hair. It’s a condition that’s not so known or common, so an average Nigerian doesn’t know what Alopecia is. It’s either I get admired – which doesn’t always happen, or I get judged or condemned – and this happens a lot,” she says.
Telling your loved ones can equally be hard, “Opening up to some friends wasn’t easy and I was amazed by how much support I got when I did even though some of them made jest of me openly by calling me an alien.”
Having gone through this journey with very little support, Jasmine knew she had to sensitize more people about alopecia and help other people who may be living with it. In 2015, she founded the Heroic Alopecia Foundation (HAF), a support group meant to create awareness about alopecia. It is also a safe space for people, especially Africans, living with alopecia.
“I noticed that when I needed support, I couldn’t find any. When I needed someone like me, l couldn’t find in Nigeria; almost every support group I came across was in Europe or America. So in 2015, I decided that I could be the support I was looking for and that was how Heroic Alopecian Foundation started. In 2016 we had just 2 members (my deputy and I) in Nigeria, now we have over 25 members in Nigeria, a few others from other African countries, and we are still growing.”
One of the missions of the foundation is to ensure that people get to know about alopecia and end the discrimination against those who live with it, “Every Alopecia Awareness Month, we sensitize people by giving interviews, creating awareness on social media platforms and publicizing our hangouts. That way, more people get to ask questions and know more about alopecia. We also encourage our members to talk more about their condition in their community.”
It doesn’t end there. The Heroic Alopecia Foundation does more than sensitizing people about alopecia. “When someone with alopecia reaches out, we talk about it and I ask them if they will like to be part of a support group and meet other women or men like them. Their reply is usually yes most of the time, so I add them to the group and introduce them to other members. A visitation is planned if he/she is comfortable with it. For members who use wigs and need support to get good wigs (we get wig donations and give out). We also refer members that haven’t been properly diagnosed to a medical center closest to them and help out if there’s a treatment option,” she says.
For the foundation, the road to creating more awareness and establishing a safe space for people living with alopecia has been bumpy.”Our major problem is getting finances. The foundation is a non-profit organization so creating awareness can be costly at times. We make do with what we have and members willing to help out do so.”
The challenges are more. “Another problem is distance. Our members are in different parts of the country, so executing some of our plans can be challenging especially when we all need to come together. So we make do with videos and social media.”
Still, for Jasmine, life has not been all lemons and sour grapes. There are many moments she is grateful for. “I don’t have to sit for hours in a salon making my hair. Showers are more enjoyable. I get to meet amazing people like me, and there’s a joy it brings when a stranger says ‘you re beautiful’ without knowing you have Alopecia.”
If you are teary-eyed… wait… there’s more: “The most positive side is finding one’s true self with acceptance. A whole new person emerges, and that’s just beautiful.”
Photo Credit: Instagram/_thepehzproject/heroic_alopecian