 The hair industry is a multi-million Naira business in Nigeria. The industry has experienced impressive growth in recent years. From the sale of hair extensions, wigs, and hair care products, it is a huge market and it is largely buoyed by patronage from women. Women are mostly identified by their hair. But does that mean without hair they have no identity? Definitely not! There is a condition called alopecia. It causes the partial or complete absence of hair from areas of the body where it normally grows and for women who have it, they experience baldness. We met an alopecian, Jasmine Ogunz, who shared her story with us. Alopecia is an autoimmune disease. But we alopecians like to define it as an autoimmune condition. So we don't scare people. The alopecia is an autoimmune condition that happens when the immune system attacks the hair follicles. Thereby causing partial or total hair loss. You know, the immune system is actually supposed to protect us from germs, diseases, and sickness. But in this case, the immune system attacks the hair follicles because it sees the hair follicles as a stranger to the body system so it attacks it. And once the hair follicles get attacked, then there's a problem in the root of hair growth. Yeah, so that's where hair loss starts from. I started having hair loss in 2004. That was my first year in school, in high institution. Before then, I used to have very long hair, like very beautiful hair. And a particular day I went to the salon and my hairstylist noticed a bald patch behind my head, just around here. It was very tiny, very insignificant. But she noticed it because she has been making my hair for a long time. Yeah, so she noticed it and called my attention to it. But I didn't pay so much attention to it because I felt it was in my nothing and my hair was going to grow back. So after two weeks, I went back to make my hair. She noticed another one on this side. She called my attention to it again. So I became scared. I informed my mom about it and my mom also didn't see it as a big issue. She just said it would grow back. And after a while, the patches started increasing and they started forming a map on my scalp. I stopped going to the salon to make my hair. It became a thing of concern. And someone told my mom it was lakba lakba, caused by dandruff. But then I didn't have dandruff. So where did it come from? She got so-for. Instead of applying so-for on the scalp, whether of it to get better, it got worse. That was how the alopecia journey started for me. How I knew it was alopecia. Okay, before I got to that point, it was the old journey because after the lakba lakba episode, there was always an extended family member who would come up with one name or the other. In fact, it metamorphosed to a spiritual problem. The third is a spiritual problem. I know in this part of the world, anything we don't know is automatically a spiritual problem. So that was when the frustration started. It started taking me from one pastor to another. And because most of this is before, it's about what they can get into their pockets. The second, you know, and it was really traumatising, you know. And I didn't know until after 10 years. Yeah, I didn't know it was alopecia until after 10 years. So I'll share a bit of my experience in that journey. First, some pastors said, someone took my hair to the ocean. That's why I don't have hair. But there are some sacrifices here and there that we could perform that would make my hair grow. So I had times that I killed cows. I had times that I killed chickens. There were times we just give out the cows raw, the meat, the pieces, you know, raw like that. There were times we cook and feed people with it just in the quest for my hair to grow back. And there were other ugly experiences I had, ugly encounters I had of some spiritual men asking to have some form of intimacy with me before my hair grow. Like it was really traumatising. It was annoying. It was frustrating. Because at some point I got depressed and I got to meet with a dermatologist who introduced some hairsprays to me that I used. It didn't work. And the moment I stopped using the spray, my hair fell off. At this point I lost my hair completely because the spray did not work. It triggered some other hormones and then I lost my hair completely, so I became completely bald. Initially it was just in patches and then after applying those sprays I lost my hair completely. I used that spray for a period of one year and six months. And at that time the spray cost 15,000 ERA so I must use a can. I must buy a new can every fortnight. It was a fortnight thing. I was buying a new can every fortnight and I administered it for a year and a half. But instead of it getting better, it got worse. And I still did not stop. I wanted the solution. I wanted my hair back. So I approached another dermatologist who placed me on a wrong medication. And because I was so desperate I didn't even bother to ask what is this thing you're placing me on? What is this medication for? I didn't know it was using me as a specimen. For every time I got 0.1 mg, I took 5 as a dose. For every time I got 0.5 mg, I took 10 as a dose. So that was an abuse. And I discovered that my memory was diminishing. So at that point I had to stop. But it had already caused some damage and I became depressed. And I became suicidal as well. So at some point I became suicidal. I almost died because I made a societal attempt. But thank God my mother was at home on that particular day and she saved me. So it has been from one bad encounter, one bad experience to another. Until 2015 when I decided I was going to do a personal research to know what exactly my problem was. And that was how I stumbled on the word alopecia on the internet. And I realized it was a condition, or it is a condition. Like what I've been going through actually has a name. And the name is alopecia. So that was how I got to know that the condition is alopecia. I started embracing myself in 2015. That was when I did the personal research that I became aware. And I stumbled on a particular lady's story online and I started following her up. Her daughter has alopecia. And I saw the way she instilled confidence in her daughter at every stage that her daughter was encountering. Like it started with bald patch. From one bald patch it increased to patches and then she lost almost everything and there were just few strands of her left. I saw the way she would pack the hair into ponytail and go everywhere with it. So I admired that. But I noticed that while I was doing my research I didn't really see much of black people with the same condition. There were more of white people. And within me I resolved that I could be a strength to other people, especially black people who are going through the same experience, who are experiencing the same thing. Because looking back to how my journey started it wasn't funny. And at that point I knew there were people who were going through worse situations than what I went through. So I decided I was going to be a voice to other people. I was going to stand my ground and create awareness. In the process of doing that I opened up to a few persons, media personnels who did not really understand my story and they made a mess of it. Because I wanted to do a come out video. So they made a mess of it and turned it to a comedy skit. That was when I knew there's really no bad publicity. Because that was when I met my deputy, Moschudat Badmos. I was really sad about it because the old thing went bad for me. It went viral. A lot of people saw it. A lot of people misunderstood the message because they actually did not pass the message right. A lot of people misunderstood it. So it went sour. And she came online, saw the ridicule and everything and she started fighting for me. So she was like the voice I did have at that down time, at that point in time. So I approached her and I was like you seem to know about Alopecia. Do you have Alopecia? She said yes. You need to see the joy that I felt that day. I didn't feel that kind of joy in ten years. I was so excited. I was so happy. I contacted her immediately. We started talking and before you knew it I was on my way to... Then she was in Ogun State. I was on my way to Ogun State from Kaduna. I took a trip to Ogun State just to meet her because it was relieving for you to see someone or know that there's someone who can relate to whatever it is you were going through. Because before then people around me could not understand. There were times I wanted to talk. I wanted to just explain how I was feeling because I didn't have people to talk to because even when I talk they don't understand. It was more like a mental thing for me but when I met her it was relieving. I felt so much relief because she could relate. She understood where I was coming from and that was how the foundation journey started. The National Alopecia Aretha Foundation states that Alopecia affects about 147 million people in the world and according to Africa Prime News there are over 100,000 persons leaving with Alopecia in Nigeria. It has not been easy running the Heroic Alopecia Foundation because one thing is for people to know what their condition is. Another thing is for them to come out. Right? So like I said, when I met Mosudat that was when the foundation journey started. They had already started singing and they lived before I met her and then we took the race together and we continued the race. Then some other members joined and we grew to about 13 members. And in the process we got to know more we got to know that Alopecia is actually a journey. You get some would accept the fact that this is what it is. Some may never accept it but it's a good thing that you are aware that this is what the problem is. Right? And we realized that a lot of people were out there suffering. They don't know what this condition is and they really need to know because if you know that you have a problem and you know what that problem is I think your problem is how soft already. So what we do basically is try to reach out to people try to create awareness. Thanks to BBC Pigeon I was featured on BBC Pigeon last year and as a result of that publicity our members joined group from 13 to 70. So right now we have 70 members majority are Nigerians we have few of them in Ghana some in Sierra Leone Cameroon, Senegal, America, London so we still feel there's a need for us to create more awareness because if you ask for my opinion I would say only 2% of people in Nigeria are aware of this condition called alopecia. I think a lot has to be done a lot needs to be done concerning awareness. There was a training I went for recently at Nikkei Arts Gallery and the first few days of the training I didn't go with my wig I didn't wear my wig and nobody really paid attention to the fact that I don't have hair I only got comments like your hairstyle is nice and because of what I went there for I didn't have that time to explain to them that it's not the hairstyle but the health condition until after 5 days I decided to wear my wig so I went there with the wig and after a while I started feeling uncomfortable with my wig on so I removed it and people were like hey it's better you look better without your wig than with your wig so another question popped up from someone why the hairstyle they all inspired the hairstyle and I told them it's not a hairstyle but it's a health condition that got a lot of people's attention and they were like oh really it's a health condition tell us about it so while I was talking I heard whispers of 2 persons arguing about one top pair somewhere that has a similar condition and the other person said no no no it's not the same top pair's case is spiritual they were arguing in their dialect in Kaba actually so I heard and I paused and asked why did you say top pair's condition is spiritual because hers is not completely of like mine she has patches and all I said yes the patch is a form of alopecia actually there are different types of alopecia hers is alopecia areata that's the medical term for her condition and I was like oh really I said yes so I went as far as explaining to them that there's also a condition called alopecia totalis where it's just limited to the head to the head alone the head loss is limited to the head alone and I also explained about alopecia universalis where the victim lose the lashes the brows and every other part of the body that has hair and they were amazed so when they told me a lot about top pair I told them I was interested in meeting top pair but guess what top pair is dead top pair died as a result of isolation top pair died as a result of stigmatization I also heard of a story of the story of one woman in Benway state that died as a result of stigmatization she was tagged in which because her hair stopped growing and she was isolated far away from people you know they stopped giving her food and that's how she died I also heard of some girls in Benin who were constantly tired and worked with broom because they have alopecia and at the moment we have two parents in Kadunahua representing their sons because they are their kids one is six years old the other one is seven there is this belief in the north when strange things happen to you they just assume you have Anjano like spiritual like evil spirits I think Anjano is evil spirits and they kept burning their scarves with fire that they are chasing away Anjano until they met me someone actually told me about them and I went to visit the family so when I got there and I removed my wig I saw the relief there was this sigh of relief that oh ok so these things are not happening to our son alone there are other people who have this thing and it's in medical condition you understand a lot needs to be done concerning awareness alopecia can affect anyone regardless of age and gender and in many cases it takes a toll on their relationships to an extent alopecia has affected my relationship with people because I remember back then in school when it started at first I didn't start covering it immediately I still rocked it and after a while I started covering it with a scarf and my friends were surprised like when did you start covering your hair you were not like this what's the problem and some of them just tried to be nutty and they pulled this scarf off and when they realized that there was something strange about my head some gave space the nutty ones tagged it a name some started calling me an alien like when I applied the spray and everything fell off like I lost every strand of hair on my body I'm talking about my lashes my brows every part of my body I didn't have hair I had a friend who was constantly calling me an alien like to my face and people would laugh about it it became embarrassing at some point and then relationship yeah I had a major relationship then that failed as a result of alopecia because my supposed to be modern law called off the wedding introduction three days the wedding introduction because of fear of the unknown you know she didn't want a situation whereby our grandchildren would have hair loss problem so she called off the wedding introduction not minding how far we had gone and then the preparation the event and all that and the last disappointment I got to was as a result of alopecia because I went for a consultation with the person I was dating at that time and he had all the medical advice I got about me like the dermatologist advised that I should not bother myself because at this stage at this point the hair loss has really gotten to an advanced stage where I might not my hair might not grow anymore you understand so he had all of that and his countenance changed on our way home so out of curiosity I tried to question him about his mood and everything and he said he's scared because I don't want to raise kids that would not have hair so to a great extent alopecia has affected my relationship with people alopecia has really affected my family in a lot of ways like my mom right now she still does not accept the fact that it is a medical condition she's yet to come to terms with the fact that it's a medical condition she still feels that there's more to it and the hair would grow because alopecia actually has a mind of its own the way it decides to go off like the way your hair decides to go off it could just decide to start growing overnight that's another mysterious thing about alopecia because it has to do with your immune system so your immune system I just decide okay I want to I want to be good I want to be perfect and then your hair starts growing again you understand so it has really affected my family because I remember when I didn't know what it was I was constantly being stigmatized because my mother would always have a scarf or a cap or something beside her and the moment someone knocks at the door she's throwing it at me to cover my head I didn't like that part I didn't like the fact that I could not just be myself you know and feel free like every other person I didn't like that I have to always cover my head and another thing is it became a prayer request till now it's still a prayer request everyone is always praying at some point at one point or the other for my hair to grow back so it has really affected my family not just me one in 20 people with alopecia also has a family member who has experienced the condition which implies that most people that have alopecia usually don't have family members with this condition not to show that the awareness is really having said so if we think about the patients who come into the clinic alopecia is at least I would say some studies have shown that it's one of top 10 dermatology consultations and because the world is generally getting more visual everybody is more concerned about appearance and we talk about quality of life so you'll see a lot more patients coming in they're coming in are reacting in itself a lot of people don't know but I don't think the awareness is really really there but remember that when you're dealing with a specialty so if you talk in the general population but if you come into the specialty community specialty hospital it's a high enough number of cases but I would say if you just ask for the general population no and so to the next question of how can we make them all aware of what you're doing if we have people who suffer from, I remember that because of the stigma of alopecia everybody knows that a woman says it's supposed to be chronic blurry, she wants to do things with it she wants to look well you don't really want to cover it but with weebs and weebs now a lot of women will just take it out on so you don't know who has a problem because of the stigma or the quality of life very very significant impact on the quality of life so people are hiding people are not able to get and some people go to those who don't really know what to do some people, the salon, the hairstylist who should almost be like the first son of, oh madam or girl maybe what's happening to your hair and do you think you need to see somebody most times they might give you their own version of what they think works and the hair loss is worsening where ideally if you present early enough in alopecia you may just be able to drink that autoimmunity alopecia often develops suddenly over the course of just a few days this condition affects the mental health of the victims and sometimes makes them withdrawn dealing with stigmatization before I became aware was not easy hard days that I cried hard days I didn't want to see anybody like I locked myself up in the room for days, for weeks there were days I didn't want to see my immediate family members my downtime and all as a result of stigmatization like I mentioned earlier that there was a time I was depressed was as a result of stigmatization because I felt stigmatized by everybody even those that were close to me you know at every point in time I was expecting people to show me love so at every moment that I don't at every time that I don't get that kind of love that I expect you know I feel stigmatized so it was really ugly for me but the moment I got to know that this is what it is I became free you know I got some form of liberty got some form of liberation and and I don't get stigmatized anymore so when people try to mock me now I just laugh at their ignorance and if I have the opportunity to educate them I don't hesitate alopecia can cause a lot of anxiety and sadness and we have more support groups in the society to help people leaving with alopecia deal with the psychological effects of this condition