Snatched Edges Podcast - My Hair Loss Story - Anon, Diagnosis Lichen Planopilaris
My hair loss story mini series I am talking to people who have experienced hair loss and talking about the journey to diagnosis and beyond
Episode Overview
Full Transcript
EA
"Welcome back to the snatch edges podcast. it's your girl Ebuni your friendly neighbourhood trichologist, and I am back with another episode of the podcast and my mini series, my hair loss story. Today I'm talking to one of my clients who had a diagnosis of LPP and hearing about her hair journey to getting me to going to a dermatologist. And you know, everything she's kind of felt in between. Now, I know a lot of you have been emailing me waiting for updates seeing that salons are opening back on Saturday. Guys I've already been telling you that, I'm not going back to work anytime soon but I do have a date in mind. It's the first of August, So I had a trial date at the salon this week where all the stylists who came in to kind of see the changes that have been made and how it will work for you guy. So we have done a risk assessment, and we've made sure that the building is as safe as possible. Well, I didn't, the owners did and it looks amazing, so I can't wait to see you guys soon. I'm currently just making sure that on my end all like the bookings and systems are in place because there are going to be a few changes to how things work, so please bear with me I'm trying to update my website, as we speak, and I should have information for you guys in the next week or two. So listen if you're not on my mailing list, please sign up because that's the place you're going to get the information first and where all the booking info will be, so please, please bear with me. I will be back in August. I'm just trying to get things like you know set good for you guys so sit back, enjoy the episode, and I will be back soon. So if you could just introduce yourself maybe tell me, you know, your age or background just so people kind of get an idea of you."
00.01.47
ANON
Anon: "Yeah, sure. So I'm 27 going on 28. Black British my heritage is Nigerian. I have kind of a busy job. I work in financial services, particularly kind of within consulting so it's a regular nine to five but sometimes I will do out like long hours, I wouldn't say they're late l, like I mean there's some people who have jobs that kind of 10 to 11pm every day it's regular for them, but for me it's kind of like 6:30 -7, on a late day. So it's not too hectic.
So it's not too busy, but it's not five on the dot. I've been married for almost two years now, so obviously outside, I have those kinds of responsibilities and busy social life as well."
EA
"I love that you added the social life in there like just to let the girls know that listen I'm not just housewife ,I'm out here, you know.
So when did you first start experiencing hair loss?"
ANON
" So what I first noticed was around October 2019, I would say, I noticed that when I was washing my hair at the very very back, I felt like a patch, almost the size of my little finger. So it wasn't a wide one but just like a little patch thinning or balding at the back. Obviously I couldn't see it because it was right at the back, but I was like, this feels strange, and then carried on washing my hair as normal, left it. As in carried on with my routine. To give people context, like, I'm a wig girl, so I went back to about six years ago. And ever since going natural I've just been wigs, wigs, wigs, for the most part, and then I'll get braids like once a year. But then, at the beginning of 2019 I noticed that my edges were thinning from constantly wearing wigs. I've never had like the thickest edges anyway, but they were getting really bad to the point, there was a patch at the front, which I think was just from the tension of the week rubbing against my edges. So I decided for the whole of 2019, I was going to do no wigs so I had been constantly getting weaves, and then in between that I'd get braids as well and I got crochet braids as well "
EA
"so you said that for 2019, your thin was no wigs and instead you decided that you were going to have weaves and some extension styles. Like crochet, how did that kind of like choice come up in your mind? What did like did you think you were trying to gain from that"
ANON
" I just thought..."
EA
" sorry that sounded so sarcastic"
ANON
" I understand what you mean. Like what I wanted was to take attention from constantly rubbing my edges with wigs. So I thought if I just do weaves, braids, crochet, I'll leave my hair, in between each style, I'm leave my hair out for two week. So it wasn't like I was constantly putting my hair in wraps."
EA
" Okay, so I just wanted to make that point clear. Okay, cool. So you started wearing different styles and then in October when you're washing, you notice a bald spot at the nape of your neck. So what was like the next step?"
00.05.04
ANON
To be honest with you, I just kind of left it . I thought that maybe because I had been having these protective styles for about a year, at that point it was October, it was like 10 months. I thought it was like tension from the cane rows, maybe it will just grow back. So I kind of left it and just carried in as normal. Fast forward to December, we went to Ghana for a "Detty December" Christmas. So yeah, I went to get my hair braided, like I wanted to get braids, and it was when the hairdresser was doing my hair and she was like, "one side of your hair seems to be thinner than the other side of your hair ". So I was like oh my gosh, what does it look like, can you kind of explain it to me. She was like 'oh it's not that bad', because at this point I still didn't have any patches, apart from the one that I had noticed at the back. She was it just seems to be thinning a little bit, maybe it's alopecia or something. So at this point, as soon as she said alopecia, I was like oh my God. My best friend actually has alopecia, she has alopecia areata. So that was just the first thing I thought of like, oh my gosh. I left the braids in, and until I took the braids out there was nothing I could do anyway. I had just paid like literally a hundred and ten pounds to get knotless braids, so there was nothing I could do. In the meantime, after she said that I was like fine, let me start researching what it could possibly be. I came across CCCA, you can explain that to the people because I'm not really an expert."
EA
It's cool, if you don't know what CCCA is, you'll have to go back a couple of episodes and listen to the podcast with Dr Yolanda Lenzy. She explains it there fully, so I'll put a link for that in there, so you can take a break, go listen and come back."
ANON
"Okay so I saw CCCA and I kind of looked at some of the symptoms. It was kind of being tender headed and feeling some soft spots and itching. To be fair I I had noticed that as well, prior her saying my hair thinning I had noticed that I had certain parts on my scalp that were sore and could be very very itchy. But then I had put it down to oh I've been wearing wigs and weaves and my wash routine was terrible, it wasn't regular. It was like once a month or every two weeks at best, so I just kind of put it all down to that. So the CCCA stuff I was like oh it could possibly be this, because my hair was thinning. So I left it, took out my braids, and when I took out my braids I had two of my friends come over, blow dry my hair and take pictures so that I could examine them properly."
EA
" Did you tell your friends before hand that you were worried about your hair."
ANON
" yeah, I literally told everyone,
I was like oh my God my hair is thinning girls. This is what the woman is saying, and they were all like, it's probably fine, you like to panic all the time, which I do anyway. So they were like all trying to reassure me, but I was like I need to see, I need to check it out, take pictures."
EA
"sorry, what about your friend with alopecia areata, like did you inform her, was she involved. "
ANON
" Oh she was, I'm going to come back to her later, because she's actually really important in the journey. So yeah, I got two of my other friends, they took pictures and that's when I saw that it was thinning. It wasn't at the point where, like there was still no bald patches apart from the one at the back. It was obviously thinning, like I could see a lot more scalp especially on the left side of my hair. I also noticed, tiny red not bumps but almost like irritation. So that's when I knew that it's definitely thinning, and whatever is going on it must be something to do with my scalp. So I kind of again kept on looking online, and you see I don't know how to pronounce it seborrheic dermatitis, you can explain. I thought maybe that's what it could be. So when I saw my best friend, I was showing her the pictures and I was like, it's actually thinning. This looks quite problematic. She again was like, it could probably be your hair care practices, but if you're worried go and see a hair doctor. It's what she called it, and to be honest before she said that, it didn't even cross my mind that that's what I should do. I looked at YouTube videos and I thought maybe I could just fix it myself with rice water, blah blah blah. For some reason when she said that, I was like that's actually true, I should probably go to the doctor. To be honest, I've skipped the GP because I've just had bad experiences with my GP. Do you know what, it's not my GP but with the GP I'm general I've had bad experiences, and also when I got married almost two years ago, I move GPs and the new GP doesn't really understand my history as my old GP who was really good.
So, I just felt, I can't be bothered.
To be fair, I actually did call them to book an appointment, but I cancelled it because I was just like this is long. Then on, can I say their name?"
00.10.12
EA
" ermm yeah, sure"
ANON
" You see the bell gravy adverts on the tube and it's free so I was like, let me go there because I don't want to be spending money. So let me just go there, so I booked an appointment with them, and I went during my lunch break and they did the trichology stuff. They looked at it through a magnifying glass and everything, they were just like, oh you have female pattern hair loss. A lot of the hair loss is concentrated around the crown area, so they were like you've got female pattern hairloss, you can take Minoxidil and you've also probably got eczema on your scalp, where the redness is. So I was like thank God, I don't have CCCA, I don't need to panic, it's just female pattern hairloss. There's nothing really much I can do about that, and maybe I'll take Minoxidil, but something in me wasn't convinced, I wanted to see someone who specialised in Afro hair. So before gone to Belle Gravy, I had actually looked online for people who specialized in Afro hair, and I came across one or two. There was actually one that I would have gone to, but they were like you should probably speak to your GP first before you come, just because like the GP will know what to do. After they told me that, I was like, I'm not going to that GP because I know what GPs can be like. Some can be very, very rude in my experience. Especially as a black woman, they won't believe you, they just wouldn't really try and identify the root of the problem. I was just like, well I'm not going there. So I got this diagnosis of female pattern hairloss, this is probably around February now, because I said, I got the braids in December. After the diagnosis, I can't of went away and I was clicking hashtags on Instagram for Androgenetic Alopecia which is basically the same thing as female pattern hairloss. That's when I found you, and I saw like loads of black women, people with CCCA that you had posted on your Instagram page. I was like oh my God, this is exactly what I've been looking for, somebody who is a trichologist that can see me, and specialises in black women's hair, so I know for sure what's going on. Then I sent you a DM and I was like oh I already got this... I was being cheap, I really didn't want to spend money. So I Dmed you and I was like I kind of went to Bell Gravy and this is what they said I have, I'm not entirely convinced because of the red spots on my hair. That's why wasn't convinced, I just didn't feel like that corresponded with the diagnosis of Androgenetica. Yeah, from what I had seen online, they just didn't feel compatible. Even though they did say that I probably had seborrheic dermatitis, I wasn't fully convinced. It didn't look like seborrheic dermatitis to me either. There were some parts where I did have it, but..."
EA
" you just knew deep down that all of the dots didn't fit".
ANON
"yeah exactly, it just didn't connect. So yeah, then I found you, sent you a DM and I was like oh do I really have to pay now. To be honest, I knew I should see you anyway, I don't know, it's like I wanted you to convince me not to come. But you were like, if you're not convinced, you can get a second opinion, so I was like okay cool. Ever since February, like once I knew for sure that my hair was thinning. I was really upset, I just couldn't stop talking about it, to my husband I was like oh my God, my hair is going, I don't know what to do, is all my hair going to fall. I just didn't know what to do".
EA
" How was he in that situation, how was he when you were like going through it ?"
ANON
He was very like oh don't worry, you've gone to see the hair doctor. Like, where I like to see the negative, he likes to see the positive. Because I knew the research I had done and I didn't really explain it to him like, oh this is what Google says. He was just like, stay off Google, don't worry just do what they're telling you to do. When he began to see that it was really impacting me and I wanted to come and see you, and I told him that I had found someone on Instagram that I wanted to go to, he was just like fine I'll just pay for it. When he said that, I was like oh thank God, and I was really happy. I just booked the appointment straight away, I didn't even wait for him to give me money. I was like, you can just pay me back later. Let me just book the appointment, and I booked it like a week or two, quick because I didn't want to sit on it and for it to get worse. So when I came to see you, you made me feel very very comfortable, you were like, do you want the screen up. I was like, no it's fine, like it's not at a place where I would feel embarrassed because I could still kind of cover up the patches.
ANON
" And at this point, I didn't even l know that there were more patches on my head, I still thought it was the one at the back, and some thinning in the middle. So when I then came and did the look through, I don't know if it's called a magnifying glass, equipment that you use to see the scalp. I knew straight away that you knew what you were talking about, from your Instagram, and I had seen results from your Instagram. Your Instagram was very encouraging, so I kind of thought that's good, because I really didn't have any idea but I was just like. What I had seen on Google was really bad, it was people who probably had gone to the doctor too late. There was no hair left on their head, when you have CCCA, the damage can be permanent. I was just like, if lose my hair, it's going to be permanent."
00.15.53
EA
" Wait, I remember you came and sat down and was like, listen, I don't want it to be permanent, now what are you going to tell me. And I was just like, you were just about to burst into tears in front of me."
ANON
" literally, I was holding it back, because I don't like holding back stuff. I was trying not to think really negatively. In my head, my hair was basically gone. Like where the patches were, because that's what Google basically tells you. That if you have a CCCA diagnosis, there's not much treatment available because the hair loss is permanent. I was like I need to prepare myself for the worst, because it's better that I think worse and get there, and you tell me so I don't cry, than for me to be positive and then I get there and it's a massive shock, for me to be like oh my God, my hair is not going to grow back. So that's kind of what I was thinking, I was like let me just prepare myself just in case this is what it is, you know like, I know what I've seen online and I know the symptoms that I have. So, when I first saw you, you weren't able to make a clear diagnosis just because of the pattern of my hair loss. So I said CCCA which I think if I'm correct, and again you can correct me if I'm wrong, with CCCA, the hair loss is usually from the crown and spreads outwards "
EA
" yeah because you had thinning in the crown a little bit, and it was more like localised on the left side and towards the base side of your neck, and there were other symptoms as well, it wasn't clear cut. So I was like, there's a couple of things going on. We spoke about like your hair care practices, if you washed your hair excessively and any other problems. It was like we've got so much pieces to a puzzle. And I felt so bad that i couldn't give you a definite answer. Especially since you had gone somewhere previously, and was telling me, oh yeah they think it's female pattern hair loss and I was just like naah. I was just like, this is permanent hair loss, and usually I don't get like worried, like I've gotten better at managing telling patients about how their hair loss is going to develop. I feel like that week I had seen you, I had seen loads of patients. And I think we've been talking on DMs before hand. I'm not going to lie, I was like why am I seating here nervous you know. It had been a long time, and I read my texts with one of my friends who's a trichologist, while you were sitting there, like this girl is about to cry, please give me an answer I need her to go home or something."
ANON
" To be fair, I kind of was prepared that it was something that is could be permanent. I was, like I'll keep on saying it, like even when you referred me to the doctor, I didn't have much hope, and it wasn't because of you like you were so encouraging. My hair care practices was poor anyway, so I needed you to help me keep on track with my hair care practices . Which I think really helped in general just for the health of my hair, which makes it grow better anyway. So, yeah my care practices were terrible, I didn't have any hope at all. So when I came to see you, the diagnosis was basically inconclusive, but you gave me tips to improve my hair care practices which include washing weekly. Which I was shocked to hear."
EA
you were just like nah nah I'm not doing none of this "
ANON
" but I had to try. Not using oil on my scalp, and I've not greased my scalp since'.
You gave me some products that I could use to deep condition, because my hair was very dry and then you referred me to a dermatologist."
00.20.13
EA
"Do you remember what you said when I referred you"
ANON
" I was like, oh I'm going to have to spend more money.
EA
you were like, this is a cash loss, and I was like urmm...
ANON
Because I knew, I've been down the private healthcare route before, I mean I use private healthcare at work, and when it's free it's amazing, but when they stop covering you and you have to bring out like £300 - £400. I was like, man my husband is already paying for this one, he's not paying for the next one. But I was like, it's better. I felt I was at the relatively early stages of catching whatever it was. And I was like, I need to just spend the money now, while I still have a chance, than sit on this thing and have it get worse, and there's no hope. I was already so gutted with facing hair loss in the first place, that I would just feel so much worse, if I left it and it got worse. Without making any effort to try and change it. So after that, I was like I need to see this dermatologist, I actually did try to do it with insurance at work but they were referring me to my GP and Corona started again. I was like, I don't want to go to my GP, I was like do you know what, I was just going to self fund and contact the dermatologist. So I did that, all whilst before I did that I was still washing my hair weekly, I was using the products. I saw the dermatologist and she was like..."
EA
" you had to go back because it got worse first".
ANON
oh my gosh how did I forget. That was bad, it got worse. The small patch, the first patch that was around the side of my little fingerprint started spreading and it got really wide, and I'll take a picture. I remember I took one picture, maybe like two or three weeks after I had seen you and I just burst into tears. I think this is the first time that I actually cried, because before whilst I was close to tears, I never actually cried. I called my mum, I was like my hair is falling out, I don't know what to do. Because I knew that it would could be permanent. I just was like, I don't know what to do, my hair is just terrible. That's when I DMed you like this thing is just getting worse, I don't know what to do. I don't even know what I was expecting.
I just was so upset, I was really in tears at that point, like if my hair could legit be gone. I was thinking about my best friend, like I'm just going to have to wear frontals. I was trying to make myself feel better like at least I live in a generation where wigs are really good now. I was just trying to make myself feel better. I was really really upset, and thankfully you called me, and you were like just keep going, just keep going. Go and see Sharon, the dermatologist that you recommended me to. I was like that's all I can do at this point. I have to at least try and exhaust all means before I start weeping. So, and my mum was like, now you've cried what are you going to do. When I called mum and I was crying she was like, what are you going to do? There's no point in crying. Then I was like, okay I need to contact the dermatologist. So i did and she was like okay send me pictures, and by this point this was probably like March. It was already lockdown, at this point I had an array of pictures that I could send, because I had pictures you had already taken. When you took pictures, that's when I saw the first bald patch. You showed me the picture, and there was like full on, there was scalp. That's when I was like okay, this thing is definitely getting worse, because up until then when I had been noticing the thinning, there were no patches, it was just thin. When I saw that patch, I was like I need to so something quick because now there's patches. And that's what I was using to make myself feel better before, like at least there's no patches it's just thinning. I think that's also why I was so upset when I came to see you. I was like, now I've got patches, I can't ignore this. There's definitely something going wrong. Before I was like, maybe it's just stress, maybe it's thinning all of that kind of stuff
But once I saw this patches, I knew there was something going on. So by that point when I contacted Sharon I had so many pictures that I could have sent her. So I sent her all the pictures, and we did an online consultation. Obviously before Corona it would have been face to face but because of Corona, I had to just make do with the pictures. That's when she was like
You either have CCCA or LPP I can't pronounce the full name."
00.25.06
EA
"Lichen Planopilaris"
ANON
yeah, so she was like, you either have CCCA or LPP but I think you have LPP because in one of the pictures that you showed me, j could see the redness of your scalp at the back of your head and that's very consistent with LPP. So I was like oh, this was the diagnosis I had been dreading because, I kind of knew that this is probably what it was going to come to, but I kept on telling myself that maybe it's not, maybe it's just eczema on my scalp, maybe but once she told me that, I kind of knew, so I had to just accept it. She kind of spoke to me regarding all the treatment options. She was like we are going to start with a steroid cream and you can take minoxidil of you want. Which I still haven't taken, I will take it, but I just have some issues. I am taking the steroid cream. She gave me a shampoo which I think is some preventive measure she said. And she said to use loads of deep conditioner."
EA
"probably just for the itchiness and the tenderness as well."
ANON
" So she gave me that, and I was still feeling like this might not work, but I got it, and I started using it middle of March, and then the last washday I had. To be honest, after about two weeks, that patch at the back that really alerted me to this hair loss, I couldn't feel it anymore. I was thinking, like maybe this thing has grown back but I didn't really want to get my hopes up. I didn't want to get my hopes up and take pictures. So at this point, from when I had seen you until March, I had made my man, this poor man take pictures every single week. And he was like, you need to stop taking pictures, you need to stop watching it, it's not going to grow like that. I was like no just take a picture, I feel like it's growing. I was like I can feel more hair, so he took pictures and I also had a patch in the middle of my hair too that had gotten worse. So like the middle was spread out wide, and I had him take a picture of that and I looked at it. I was like this looks like there's more hair, but I was like I need to find a picture from before to make sure I wasn't silly or imagining things. So I went through the archives, and the patch in the middle was what I compared it to. I was like, this has define grown. My hair, it was smooth before it was like a landing strip almost, and I was like oh it has grown."
EA
" Just for clarification, it wasn't like that. It was probably the size of a 50p coin, but yeah I can understand how it felt for you.
ANON
"When I compared the two pictures, that was when I saw that it had definitely grown. It was the same piece of hair and there was definitely hair on it again. I didn't want to get too excited because I didn't want it to fall out again. I don't even know how I got here, I didn't want to get excited but i was so happy to see growth. Especially for me because like I said, I really didn't think it would work. Even when I went to see Sharon, I reluctantly used the steroid cream just so I could say that, I've tried everything and it's still not working. So when I saw that it was actually working, I was shocked. I was like oh my gosh, there's actually growth. Yeah that's really where I am today. And other things I've tried to do like self diagnosis, because it's inflammation that causes the hairloss, I've been taking natural things, trying to improve my diet. Again I don't know if this is contributing or not but I feel like I'm getting results. Also because we're in lockdown, I believe not having the stress of having to commute massively helped as well. I was so stressed out last year, one of the things I read was that stress can contribute to inflammation. Your cortisol levels increase when you're stressed and that kind of equals all sorts of problems with your body and your immunity just because your body has to work harder because you're stressed. So I've just actively trying to manage stress, there's apps. Last year I feel like I just liked to carry stress. I can't do that anymore, it's not good for my body. Apart from this issue of hair loss, I had other symptoms so I knew for a fact that stress was a factor to the things going on with my body. I was like, do you know what, I can't do stress anymore."
00.30.06
EA
" Now that's amazing hear. it's been like a holistic thing for you. Okay I'm going to like do these things just for my hair, it's like had a deeper impact where you are taking care of yourself better. "
ANON
"yeah, for sure, for sure."
EA
listen, when I tell you my stress levels are high, every time you DM me, I'll be like. When you called and told me your hair is falling out, I called you and I was like brave yourself, you're going to get blasted. Do you know what yeah, just keep at it. I was proper trying to reassure you that. Not that it's not as bad as you think, but like the scarring wasn't like widespread. I feel like you were very very early in the disease process where you had some damage. But because your hair was also like in it's weaker state you were more susceptible. You had all of the symptoms, breakage, the redness, itching everything. I was like, let's just try, especially with your hair care routine and get some of those out, because some of them were not related to LPP at all. If you could do that, you'll see results in the feeling of your hair, in how it looks, the health of it and then we can tackle the underlying causes as well. Yeah, I was just like the more you stress about it, you're going to get shedding as well, so it's just like you are adding to things on top. And I was just like please, relax. I know it's easier said than done, but I'm so glad you took all the advise and worked on it especially how you're saying now that you didn't believe you could make any difference to how your hair was behaving at that time, so yeah. When I got that last picture from you, I was like this is working. If I'm glad that anybody had like, results I'm really happy that you did; because seeing how down it made you."
ANON
I was, I didn't even think that hair loss would make me like down. I've never been like a hair girl, for me length and thickness, I was like as long as my hair is healthy, I don't really care about the length because half the time I'm in wigs anyway. I never thought that loosing hair, would make me that upset until it actually happened to me. My best friend has Alopecia Areata, and my other friend also has Alopecia areata. Especially my other friend, when her hair was falling out, like I saw how upset it made her, and I was like don't worry, you know, it's hair we can just wear a wig. Until it happened to me, anytime someone tells me they are loosing their hair, I would never minimise how they feel. I know how it feels and I know how horrible it made me feel. I was so surprised, everytime I'll get upset about it, I'll try to tell myself don't be so upset it's just hair, you can just wear a wig. You're still healthy, you're still living, there's people out there dying, especially when this corona came. I would try and make my self feel better about it, but it's really an upsetting thing to go through. It really is, and I just think if anyone is loosing their hair, you're actually entitled to how you feel. If it makes you feel down it's okay, like when it happened to me, I didn't realise how upset it could ever make you like seriously. It's like it takes over your life, like what you're thinking about. Oh my gosh my hair is going, what am I going to do like, how is this going to work. You just don't, realise how much you take having hair for granted until you start to loose it. It's not a wonderful feeling at all."
EA
" And what I like about your story is that you had such a wide support system. Like, you had friends who had experienced it, you were able to talk to your family and your partner as well. I know a lot of people I've seen, maybe they have one or two people, but they are not able to discuss it freely. How do you feel that helped you to be able to like manage your feelings?"
ANON
With my husband I feel like at first he really minimized the hair loss situation. He was like, 'don't worry' because when it was just the thinning he was like, don't worry about it; you're probably being dramatic maybe it's like bad hair care practices etc I was like, no I'm telling you, I can feel it, and then when he started getting to see how upset it was making me that's when he was like okay, fine if you really want to go and see this person I will pay for it. And like I said, if it wasn't for my best friend saying 'if you're really worried, go and see a hair doctor' like I said it never crossed my mind that I should do that. As much as I knew that there were people out there who specificalised in this kind of thing. It didn't cross my mind. I was too busy thinking, 'my hair is growing, I don't have any hope".
00.34.51
EA
yeah, because you couldn't speak to your GP as well. That's like another point of barrier you had. It could have been that, if you were comfortable speaking to them you could have been referred to a dermatologist, and gone down that route, but that was kind of like a closed up option for you. "
00.35.05
ANON
As much as I skipped the GP, I'm kind of glad I did because I feel like with my GP, it would have taken me longer to get to you, because he might be like it's nothing too serious, this and that. Whereas other GPs would get started with the steroid GP straightaway, so it kind of depends."
EA
I think It's good to see your GP even if it's just to get bloods done". It's like, you kind of knew in yourself that even when you told this is what it is, you kind of were like this doesn't feel right. And while I hate Google for some of the images and misinformation, it did help with you to solidify that actually this diagnosis maybe doesn't make sense to me. At the end of the day as much as like my friends and other specialists know, everybody knows their body kind of intimately. Do you know what I mean, like actually there's something still going on, or this treatment might not be working best for me. I think it's good to kind of like be informed yourself. "
ANON
I agree and I think because I had looked at the pictures and I had seen the spots and stuff, I was like if this is female pattern hair loss, all these red spots I am seeing, I don't think I would have that. There's probably something else going on,. Try and stay off Google if it's scaring you, but it is good to be aware of all the potential possibilities of what could be wrong and what the possible symptoms are. So that you know that if you're symptoms don't match up with what you think. You can kind of push for a clear diagnosis."
EA
Yeah. And so what kind of things where were you to kind of like looking online, because i know you said you used to like search Instagram hashtags and like YouTube and stuff. Were you looking for like bloggers or were you looking for like NHS website or dermatologist what kind of like places where you seeking information how I getting it."
ANON
"When I first kind of saw the issue, I first started on Google,that was just like random people giving their experiences and they're not really qualified. And then I went on YouTube and I saw, I forgot this woman's name, but she makes really informative YouTube videos On black hair.
Okay I forgot her name, but she's really, really good because it's not just ... she tells you the science behind it, it's not like, this is my story I use rice water for hair because ..."
EA
I'm not gonna say anything there".
ANON
"With a lot beauty bloggers it's like they can make it all about their personal experience and everyone is not gonna see the same result. But the person that I first came across was somebody who was more of an informative person . She was addressing the general issues that black women face, blah, blah, blah. These are the symptoms of CCCA , if you have it it's really important thing to do this. So that was the first video I saw, and I was like this sounds familiar. Then from there, I will take each potential guidelines for my symptoms I'll put them in Google and then I'll see. And then there's another doctor in Australia, dr. His name starts with D. He has an actual website about hair loss and he will tell you kind of information that will be valid . He will tell you your symptoms, your treatment methods etc. And that's one of the reasons before I came to you, I was like, if I have LPP I'm basically screwed, because the information that's out there is very very negative about LPP.
It basically tells you that even from what I've seen, from other people's experiences. Doctors can very negative about it because they don't really know what causes it, they don't really know how to address it. For some people even if they give you steroids it just gets worse and worse so I was just like, if this is what I have, from what I've seen online it basically looks like it's impossible. I even it said to my husband When I knew that's what it was. He was like why don't you try this, I was like don't tell me to try this because I've looked online and this is what they said. It literally said, no matter what you do, there isn't really much you can do to treat it. I even had to talk to the doctor when she told me, it's probably LPP and she'll have to give me some steroids, I was like, do you really think it's going to work. I had seen online that it's probably not going to work. And she was Like you can try it and doesn't work, we can then give you steroid injections. And if that doesn't work, you know there's plasma something that you can try as well. So she was just like there quite a lot of treatment options and you start with obviously the least thing basically see them got to get with that. And then you can continue and continue on to see what helps. So, yeah, I think, and like I said I'm not gonna lie, even with steroid treatment. I didn't think I was going to see results . I was very, very skeptical. In general, I'm sceptical of people that say they've got miracle hair results. We've all probably tried something online and it's just not going work . So I was just very sceptical, like even if it's science it's just gonna work."
00.40.06
EA
"Your story is amazing because it's like, I know that you were still early but like you had such good results so quickly."
ANON
I was surprised as well, I was genuinely shocked. That's why I have to say that if from the minute you catch hair loss, you should really be seeing the doctor. I even think I left mine a little late because when I first noticed that patch in October hat's what I should have been concerned but I don't know why I wasn't because I thought it would just grow back. If you see a patch, and you haven't been doing tight hairstyles immediately just go to your GP skip everything online to do X, Y, Z just go straight to somebody who can give you professional help."
EA
I think that's what's like the difference is sometimes is that catching it really really early, sometimes, especially like when it's subclinical or things like that you can just be like, it might just be thinning or it might just be the style that I did. To kind of attribute the symptoms to something else, like you said when you went to the hairdresser's you were like, Oh, actually I noticed some of these things or when he looked at I mean, you're like okay I've actually had some of the symptoms but you didn't put all the pieces together ."
ANON
" Especially like with mine, my scalp was itching in the same place. I was just like, my scalp is so dry like what's going on, and the oils that they will give for itchy hair, so I will go ahead and buy oils for itchy hair, not realising that the oil is probably gonna make my symptoms worse, because I also have the seborrheic dermatitis and so then I'd be putting oil on top of the dry scalp and then the scalp will still be dry, and still be itchy. That's why my dry scalp was just getting worse and worse and worse, and I just didn't know what to do."
EA
" I'm so happy for you, I'm really really really happy. This is one of my favourite results story. You had me sweating ."
ANON
"I feel so bad"
EA
No no, don't feel bad. As I said, it just like it was just like the timing of it, I think I'd had like a really difficult week at that time, and then seeing you upset because I think the build off of it as well. Usually I don't get to have much interaction with my clients, but we'd been talking for a while. I've been here, what should I do not like, I mean you can take the treatment you can have a consultation is up to you. You were like, this is happening. I was like sis l you can have a consultation if you want but it's not going to happen over DMs."
ANON
Even I knew that I should have a consultation but I was just trying to convince myself not to spend money, but I just thought it was really worrying. My husband did say that, if that thing is worrying you literally I'm going to pay for you to see someone so that you can feel better.If not I don't know what I'll have done to be honest. It was like you said, the support system my friend who told me go and see a hair doctor. My husband was like I'll just pay if you want a second opinion. Yeah, yeah, I think without those two people, I don't think I would have been defined in terms of the hair journey."
EA
"Now we can talk about it if we need help. Can we quickly touch on a bit more detail of their dermatology appointment, I know it was a bit unconventional because it happens like virtually during lockdown. But a lot of people like they'll come and see me, and then kind of get to a stage where I'm like okay even if I have more of a conclusive diagnosis, but the dermatologist needs to give you the specialist medication for it. How did that go for you, like, what were you thinking and feeling, you know, if when you're talking about like, like maybe the side effects of some of them. What did you think about taking that medication or like using like a specialist cream for hair loss.
ANON
" yeah i'm not, I was I'm sceptical like I said when I heard steroids. Even my mum was like when you get steroids, please just be careful, because sometimes it can make people gain weight and some people do have symptoms and stuff. Even I'd seen online, some particular hair person online who was like basically saying one of her clients had had hair loss and didn't see much results with steroid creams. I think people tried to negatively about the steroid creams, but where I was, at that time, I was just like, I'm just gonna take, one thing I'm grateful for is how your page is. You kind of, when you do that mythbusting thing. Yeah, it really helpful, I think for someone like me, I thought that was so helpful, because you're like, this is what I know. This is what I studied, this is what I have seen. The place where I was at I was just like, I need to try something I haven't seen any results. So, this is not going to do any harm. It's already gone worse. It's either it was going to continue to get worse, or the steroid cream will actually help."
EA
you had kind of like nothing to lose"
ANON
"Exactly, and one of my friends and I told one of my friends was like (I think I told all of my friends) because I'm so open about my hair loss with my friends and I found so many of my friends have different stories we all have a hair story. One of my friends was a pharmacist, who also had a similar she had like a hair loss experience, It's not LPP or anything like that I think her's is for eczema. she was taking steroid cream for her eczema on her scalp and she's always like
it really helped. Don't worry, you can take it like you'll be fine, you shouldn't see any side effects. So she made him feel a bit more comfortable in taking it, I would have taken the option anyway, but speaking to somebody who was a pharmacist who is my friend, going through a similar situation. She was able to kind of reassure me like, Oh no, it's fine."
00.45.34
EA
That's really really good that like, I guess openness really helped you on your journey and like pushed you forward. At times when you weren't really able to make a decision yourself."
ANON
but I understand that not everyone is going to want to be open, because It's gonna be really embarrassing and it's really distressing. "
EA
" but why was it embarrassing, that's what I want to like get. In your case especially it wasn't your fault, your immune system was working against you. Do you know what I mean, This isn't something that you did to yourself."
ANON
but you just feel like, oh man like I've got patches on my hair. Like, I just felt like oh my gosh it doesn't look nice. And you know, with everyone who's got such nice natural hair I just kind of felt like this is really embarrassing. I think, for me because I've had friends who had hair loss experiences and who had been open about it. It was a, I thought that's probably why was my friend that has alopecia first, because I felt like she might, she would know kind of how I felt talking about it. I also felt really bad going to her, because I was like, here I am with three small patches on my hair that I can easily cover up, and my friend has alopecia areata And literally, there was nothing she can do about it. She's very open like she shares her story online and things like that. So it's not something that's embarrassing to her but here I am crying about what I'm going through. My friend has alopecia areata she's had it since she was four. And she's had to come to terms of it. Now she's 28 and she has had come to terms with it and I'm here complaining and crying about my hair I felt really bad. Even when I'lld go to her, I'll be like I'm so sorry, I know that you have your own hair story and this is, like, this is just such a small thing to be going through, but I just didn't know what to do. So yeah, it's hard to talk about something even now, as much as my friends know what I'm going through I'm still trying to come on here and be acknowledged. "
EA
"Yeah I can understand that but I feel like you're still sharing your story. And so even if you don't want your name out there and stuff because, I mean, not everybody wants t you know, their whole business on social media, for anyone to do whatever they want with it anyway. So yeah, I think what how would you, I don't know, like do you still feel embarrassed about it now?"
ANON
well not really, but that's because everyone knows all my friends, even at work. Like when it was happening I was so stressed. Like I'll say to my manager honestly I'm really stressed out right now and on top of that my hair is falling out, I can't deal with this right now. I'm very open so to be honest, now, not really. Everyone all my close friends that I speak to. They know that I had hair loss. And when you posted my hair. I literally like DMed you like, these are the pictures I know like even, even when I Dmed you some of them I used like caveat, like this is embarrassing, that you can actually see the bald patch on my head . But this is the progress that I'm making."
EA
Do you feel like you've got any like negative responses to sharing your story."
ANON
No, not at all. The only thing I will say was like in the beginning, with my mom and my husband, they kind of just like, oh you know maybe you'll just stressed out maybe. Everyone tries to say, maybe it could be this, without actually thinking that there is a possibility that it could be somebody that actually rice water and oil is not going to help me with. That's the only thing, I would say that people can be sometimes like oh just dash Aloe Vera on it and it will go. But sometimes I think that we shouldn't ignore the possibility that it could be an immune situation going on here. Let's start by not trying to take rice water and aloe vera and go straight to the GP."
EA
Because I guess when it comes to hair people feel like they don't maybe understand that. Apart from that maybe that alopecia areata, there's like diseases of the scalp and the hair that can cause problems. They're like maybe it's like you know I haven't. Again, it feels very internal like I have, like, Maybe it's like, products I've been using or like, you know, something that I've done wrong with my hair care.
ANON
" Even I didn't know, that's why when I first found my patch, I was like I've been doing braids this whole year, and I have to stop manipulating my hair so much. And I think part of the reason why we do that as a community is because of all of the resources that we have available to us on YouTube, with people sharing their hair journeys, people share that hair loss mistakes as well but a lot of the time they'll just tell you oh it was because I was doing this, now I'm doing this and it's made it better without actually, this is what it was LPP. And I think maybe in other communities that are not African, black. It's not necessarily like that ,they wouldn't say oh use this conditioner, I might be wrong, but,I'm just speaking from my experience."
EA
"No it's true, yeah I can't speak up for outside communities but it definitely does feel like, you know, when we have an issue of our hair it's kind of like, Alright, let's go down to you know the hair shop first or to YouTube and figure out like you know what kind of quick fixes is here. And if we see anything with like, you know, growth oil or like, you know, like me, I did it as well, When I was younger. With 'dear grow 'and stuff like yeah and at some point I felt like it grew my hair back when it was like I was taking better care of it. Yeah. So, yeah, definitely seek help, where you can. Excellent, any parting words for the people?"
ANON
No I would just like I said , If you know this problem, I would say goes to the GP first. Of course it's still good to try other stuff to improve your haircare practices, as I said, I had had practices that were wrong which have now helped me as well, but definitely go through GP and have hope, because everyone told to have hope"
00.51.25
EA
"Excellent, thank you thank you so much and I'm wishing you more hair growth, you know, less stress."
ANON
"And thank you so much for the work that you're doing. Honestly, when I found you was like a breath of fresh air. It was such a relief for me and it gave me hope even before I've seen you. There is actually a possibility that my hair can go back and I think if I didn't find you. I would definitely still be lost. Now I wouldn't even know what I'm doing with my headset. Thank you keep doing what you're doing."
EA
I appreciate you, thank you so much
00.51.51
ANON
No worries, thank you
