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Alopecia (young people)

Alopecia symptoms: what does alopecia look and feel like?

Alopecia is a broad term for hair loss. There are a number of sub-types of alopecia and most of the people we talked to had alopecia areata (including totalis and universalis). It can affect different areas where hair can grow (scalp, face, body). This section is about the signs and symptoms of alopecia, such as bald areas, losing hair and regrowth.

Bald patches and areas 

For many of the young people we talked to, their alopecia started with a patch that was quite small and not very noticeable. Sometimes it was pointed out to them by other people, including hairdressers. Lots of people had asked friends, family or work colleagues to check for them, especially if the patch was on their scalp and they couldn’t see it easily. Rochelle was shocked when she felt the bare skin on her scalp. It was sometimes possible to cover small patches on the scalp by styling the rest of their hair, but not as easy for those with short haircuts or patches on their hairline. While some people said they weren’t too worried about the first small patch or patches, others were upset and felt panicked. This was usually the point when they booked a GP appointment or were referred to a dermatologist (skin specialist). Both GPs and dermatologists can diagnose the symptoms as alopecia.
 

Ben talks about his experiences with alopecia from when he had his first patch at age 14.

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Age at interview: 18
Sex: Male
Age at diagnosis: 14
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I first had my like my first bald spot when I was 14, about the size of an apple on the back of my head. I didn’t really think much of it. I was quite young. I just thought it was temporary. It will be fine, you know, nothing to worry about. Six months later, it grew back. And a couple of years later when I was 16 I had-, it came back again and I thought ‘oh’, you know, ‘no problem’. And that time it just gradually got bigger. I just covered it up, you know, combed my hair across it, you know, just a bit-, no one really noticed. And then probably I started sixth form, I got like two smaller ones on the top of my head and I thought ‘oh no’. I was more worried about it but I was still saying, you know, “It’s fine,” type of thing. And gradually over that year they got bigger and bigger and they- then they met in the middle and that was really hard. I had, I had like a big spot at the back of my head for ages and I used to wear a hat a lot. And that was the most difficult time I think. I felt like I had to wear a hat because, you know, it was quite hard walking around and I felt like people were staring. People used to look because it used to look a bit odd. And then when I-, in November last year, so almost a year ago now, I lost about-, I had about 50% hair loss on my head. So I decided to shave it all off. I felt much better after I shaved it off like it was liberating I guess, you know. It was just quite nice and it was just I had to do a speech at school the next day, completely forgot about that when I shaved my head. So I had to go in and like in front of the school and I had just my shaved head. It was just almost quite nice because everyone saw the new me in one go and it was just like, I took control of it rather than it controlling me. And then from that obviously I had little like stubble but that gradually disappeared by February.
 
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Arti thought she felt an old scar on her scalp at first.

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Age at interview: 22
Sex: Female
Age at diagnosis: 22
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So my first patch I discovered I actually thought was a, a scar from an injury as a child. So I just thought nothing of it and I did show people and I was like, “Oh, look at this. I think it’s a scar that I’ve never noticed before.” And then it sort of disappeared afterwards and I was thinking ‘that’s a bit strange’, cos I couldn’t find it. And then I discovered a patch in, in a new place and another one and I think it was probably about two or three little patches of coin-sized small patches I had, and that’s the point where I went to the doctor. So that was actually earlier this year. So I think that was about February. 
 
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Rochelle’s family didn’t believe that her hair was falling out at first. It felt like everything was happening very rapidly once she started seeing doctors.

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Age at interview: 23
Sex: Female
Age at diagnosis: 14
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Did you talk to anyone about it when you first noticed that there was some hair missing?

My mum. I was like, “Mum, I’m losing my hair,” my mum was like, “Oh, Rochelle, you’re chatting rubbish, you can’t see nothing”, “Oh you can’t see nothing, Rochelle, its fine.” And then when it started to drop out I think that’s when the whole family was like, “Oh my gosh”, and when I could feel my skin from my finger on the skin of my head, that’s when I was just so nervous and crying all the-. I think every day I was just crying, I had to put this band on my hair and I was just, over my head, and I was just like ‘oh my gosh’. And then, yeh, my mum, and then me and my mum went to the doctors and then we went to the dermatologist because by then when we saw it actually dropping out – it was all like rush, rush, rush, rush, rush. Because when it’s falling out you don’t really see it until you see it and then by the time it had fell out that’s when everything was a rush. We had to go and go to the doctors go to the dermatologist, try this and try that, and that’s when I tried to look into more research and talking to the people.
Severity of hair loss

The extent of alopecia (how much hair has fallen out) varies and links to the different subtypes. Some said their hair loss involved one small patch about the size of a 1p coin which regrew after a few weeks or months. Others developed more patches which sometimes joined up into bigger bald areas over time. Annie X’s first patch continued to grow bigger and more patches developed. People sometimes compared the severity of their alopecia to that of others, including those they met through support groups.
 

Hannah says it’s important to think about how quickly alopecia happens for different people as well as how much hair falls out.

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Age at interview: 21
Sex: Female
Age at diagnosis: 16
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I think a big thing that’s missed out on is how rapid or how different alopecia can be, so it can vary. So some people can have like their hair go in two weeks and other people will be losing their hair over a matter of months and, or like years, and so that really varies and has in a-, it’s interesting to see the different effects, cos it can have the same effect on a person that’s lost it in like three weeks to a person that has lost it over a matter of years, but then, struggling with it for years can sometimes be tougher and also it makes it less likely to grow back as well, like your chances of your hair growing back depending on how much you’ve lost, go down. So I know that they say, I think it’s after the first year of alopecia if it’s under, if it’s over a certain amount of hair gone and without like good regrowth then you’ve kind of gone from a 70% chance or something down to like a 20% chance of it regrowing. But then it’s all just numbers and guessing because, you know, people with alopecia universalis, they say, you know, they’re less likely to grow their hair back and I know of someone that had all their hair grow back, no treatment, just grew back out of nowhere and that was after 10 years, which is really weird because you don’t know, you just, I think it’s possibly because it’s your immune system and it could maybe be a different stage.
Having large bald patches or entire areas of bare skin can have practical issues. Danny has to use lots of sun-cream on his scalp and face to stop his skin from getting burnt. His cheekbones sometimes get burnt as he doesn’t have much eyebrow hair or eyelashes to give shade. Lots of people said they sometimes wore hats because their head gets cold, especially in winter. Hannah found it “weird to get used to the breeze”. At the same time, those who wore wigs and hats found they could become too hot, sweaty and itchy.

Losing hair

Lots of people pointed out that losing some hair loss is normal but that in alopecia the amount of hair falling out is greater. Some people knew when they were losing hair because they saw a lot of it loose (in strands or clumps) when they woke up in the morning, on their pillow, clothes and carpet, or when they showered. This was especially noticeable for those with long and dark hair. Emma used to worry that people would think she was “really dirty” because she had hairs on her clothes. At the time, Krista thought some itchiness on her scalp was eczema but now thinks it may have been where the hair was falling out. Some people talked about exclamation mark hairs as a sign of alopecia areata. Laurel explained that exclamation mark hairs are when the hairs are narrower in width near the base than further down. 

Hair loss can be rapid, as for Imogen whose scalp hair completely fell out over two weeks when she was 7. Others hadn’t noticed losing more hair than usual and only realised something was different when they felt or saw a bald patch. Rochelle says her hair loss was gradual and “very slow”. Finding a bald patch made some people more aware of seeing their hairs loose and Ben thinks he “really noticed it because I was looking out for it”.

Some said the process of losing hair was more upsetting than the baldness because seeing the loose hair was a constant reminder of alopecia. Ben said it was “the feeling of being out of control which hurts the most”. For this reason, some decided to cut their hair shorter or shave it off. Imogen found it easier to shave her scalp and wear wigs because she had “more bald patches on my head than I have patches of hair”.
 

Michael worried about other people seeing his bald patches and his hair falling out, which distracted him at school.

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Age at interview: 19
Sex: Male
Age at diagnosis: 13
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During school I became more distracted, and did not concentrate a lot of the time. I would often try and sit at the back of the class, so I felt no one was looking at me. And in my exams I sat at the back, because I always felt like someone was looking at, looking at me throughout. In my A level exams, my eyebrow actually fell out during one of them, or noticeable anyway. So I had hair on my page as I was attempting to work. And that was one of the biggest distractions ever, so. And lower down the school when I had more hair, and the hair loss was occurring, as it was falling on my page during the class, I just didn't pay attention, and I started getting distracted more and more.
 

Annie X remembers times when she could see lots of hair coming out.

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Age at interview: 15
Sex: Female
Age at diagnosis: 11
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Definitely, because I am really neurotic about it, so if I think, if like one piece of hair comes out I’m like, “Where did that come from?” and I sort of pull from that place, which doesn't help, so don’t pull [laughs]. But I remember when it first started it was like there was hair everywhere. There was hair in bed. There was hair in the bath. It was like you could literally scrape the bath and you’d get a massive chunk of it. I would wake up to hair all over my pillow, it would be all over my clothes. So it was really, really bad and sometimes when I think about how alopecia hasn’t been that bad, I think back to waking up and seeing it everywhere or stepping out of the shower and it being everywhere or just it being constantly around you. And when it’s constantly around you, you can’t sort of not think about it, because you’re constantly being reminded that it’s happening. And if you touch your head, it might come away. So, it’s that that was probably the hardest thing to see, because you just want it to grow back so badly, and you, but you can still feel it and see it falling out around you. 
 

Emily talks about her decision to shave her hair.

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Age at interview: 20
Sex: Female
Age at diagnosis: 19
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And then I think it was a couple of weeks after that and it was just constantly coming out and I couldn’t wash my hair because I would like get the drain all laced up, and when you live in a shared house that really annoys people. And just like brushing, I couldn’t brush my hair. Like I would panic about brushing my hair because it would just come out and I, I’d been wanting to shave it for a while and then one night it was I think it was about 10 o’clock at night and I had a 9am seminar the next day, and I was like, “Guys can you just like shave it please? ‘Cos I’m just fed up.” And they were like, “Okay.” And they all like gathered around in the kitchen and I was just like, “Don’t watch me. Like it’s horrible.” And unfortunately the clippers lost battery half way through, so I had to then like snip the rest off, but I think as soon as I’d got all of the hair off and it was gone I just, it was really like liberating, it was nice to not have to worry about constantly being reminded about your hair coming out. So I think that was when I realised that the worst thing for me was it coming out rather than not having hair. Yeah so I think, I mean it was, it was a positive experience for me definitely. And something I would do again if I ever had to. Because just I think the relief of it, especially when you’ve been living with your hair coming out for like the last four months it’s, it’s nice to not have to worry about it.
Regrowth

Regrowth is when a bald patch or area starts to grow new hair. Lots of the people we talked to had experienced regrowth, but not everyone had. Danny was born without hair and, although he now has some eyebrows and eyelashes, he’s never had hair on his scalp. Beth’s been fully bald for six years and sometimes wonders why her hair hasn’t regrown when it has for other people. Although she had already thought her hair wouldn’t regrow after so many years, Emilie appreciated when a doctor was honest that her hair probably wouldn’t grow back.

People talked about different kinds of regrowth hair. Some said their regrowth hair started out lighter and finer than ‘normal hair’ (like “peach fuzz” or “baby hair”). Others had darker and more defined hair growing back. Emma said her hair regrew dark brown whereas her original colour was “gingery auburn”. Some found their skin itchy when the hair was regrowing. Regrowth was usually uneven and the hairs sometimes grew in different directions out of the follicles. Elizabeth’s hairdresser suggested she get a “whacky haircut” to include the different lengths of her regrowing hair, but she says she’s not comfortable with this. Hair growth could happen quite quickly, as for Krista, or slower. Annie X’s hair was drier and coarser when it grew back the first time, but the next regrowth was strong and shiny. Krista said her hair grew back white or grey, “bristly” and curlier than it had been before.
 

Meghan describes her experience of hair regrowth.

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Age at interview: 20
Sex: Female
Age at diagnosis: 10
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And can you tell me a bit about that what it was like when you were having the regrowth? 

It was a slow, slow process. But I’ve originally I had a line from the front to the back, all gone in the middle and down the sides. And that middle bit was the first bit that ever grew back and it was growing back up like this so I was getting more remarks at school like saying that, I don’t know, I looked like I had a Mohawk or like chicken, like a chicken fluff, whatever. That I was happy to have it back, but I was willing for it to grow faster and after that the sides I, because I was hiding it from myself I didn’t like to look at myself in the mirror I never really knew when it grow back, grew back but it did. And then it fell out again 2013 and started growing back 2014 and that’s been a really slow, I’ve got that much in a year down the sides here. And it’s a slow process, but I count my blessings that they are there. 
 
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Laurel says there are different types of regrowth hairs.

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Age at interview: 17
Sex: Female
Age at diagnosis: 15
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Well you get three different kinds of hair. There’s the exclamation hairs, there’s the white hairs and then there’s the good hair that you want to grow in. The white hair is not actually too bad either because you can have a few hair growing in white. I know it’s a bit weird but it’s still grown in. But exclamation hairs grow like the shape of an exclamation mark. They grow out thick but the roots are really thin so they just fall out. So if you think you’re like getting all happy because you’ve got hair growing in, it just falls out again. But then you get sometimes it just grows in completely and you don’t have to worry about it again. Cos I remember that, that happened to me to start with like it all grew back in. They said, “Oh it’s never going to come back.” But it did and I think that’s the scare for, for like it’s going to be a scary thing for like the rest of your life cos you don’t know if you get stressed it’s gonna grow back in then fall back out. But yeah, you either want white-, I’d quite like to have white like- some of my head’s actually all fluffy like white hairs and you can see it in the light. You can’t see it on this obviously but in the light it shines on it and it’s white fluffy hairs which is really good because you want that. You want your hair to be grown back. But it’s quite a weird condition actually with the way it grows in and the way it falls out and why it falls out.
 
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Becky finds it’s difficult to tie her hair up when patches are regrowing as the hairs are different lengths.

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Age at interview: 23
Sex: Female
Age at diagnosis: 14
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At the moment, I have got a patch that’s growing back and it will grow typically about just over an inch a month. So it does grow really quickly. But when it does grow back it is really fine. It’s like really fine baby hair. And it gets to a point, because I put my hair up a lot, because of riding or because I’m outside a lot in the wind, my hair goes up a lot. And then you get the problem that the little patches that are growing back aren’t quite long enough to fit in the bobble. So they will stick out. So it’s hairspray galore trying to get those back down. But yeah, it’s really fine. It does grow quite quick. But the problem is that it never all grows back at the same time. So you’ve got some where it’ll be two or three inches long. And in some where it’s just an inch. And as well it’s never-, cos my hair’s, you can see, it’s quite long. My hair’s past my shoulder, so it takes ages and typically all of my patches will have grown to hair length and then I will start losing it again. So it’s different patches that, that fall out at different times, so there’s never-, it’s never all one length. My hair it’s always got random bits growing and some bits longer than the others. 
The reasons for regrowth were often unclear. Sometimes people thought it was due to treatments working (like steroid creams or injections) or a trigger changing (such as being less stressed or having a ‘healthier’ diet). Most of the time, people said they didn’t really know why their hair had started to regrow (or why it had started falling out in the first place). Emilie says she often gets some light regrowth on the sides of her head in summer, which she puts down to the warm weather. Elizabeth used a steroid cream on her bald patches when she was younger and had regrowth but doesn’t agree with her doctors that this was due to the treatment.
 

Professor Moss says alopecia areata does not cause scarring.

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Alopecia areata does not scar. Scarring alopecia refers to types of alopecia which are due to inflammation in the skin of the scalp. So, for instance, there's a condition called lupus which can cause alopecia hair loss which has a scarring process and that doesn't recover. Usually-. Because the scar damages the hair follicles to the extent that they can't recover. But alopecia areata is not a scarring process. The follicles are still there, but they may be very, very small. They've been attacked by the body's immune system but they are still there and there is still the potential to recover. The, there isn't a scarring process that completely damages the hair follicles so that they can't recover.
 

Hannah noticed her hair regrew after she had been very ill.

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Age at interview: 21
Sex: Female
Age at diagnosis: 16
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We, we’ve kind of like, me and my family have spoken about it all the time and thought, y’know, could it be like physical health. Could it be like if you are eating enough healthy things and everything. And, my diet kinda changed recently this year and I’ve noticed that I’ve had better regrowth but it’s never been perfect kinda regrowth until I got ill and it kind of, it seems like my immune system’s kind of changed its direction into focusing on the illness instead of focusing on, on my hair. But no, not really [laughs]. Don’t know. 

Would we be able to talk a bit more about how other health conditions interact with your alopecia?

Yeah. I don’t really know how, like I’m not, like majorly good with all medical stuff, so it’s all theories really. But I got quite unwell with a virus which basically, in bloods, was showing that my infection markers were extremely high. So, they were fighting, my body was fighting off something, and like the antibody, the ANA or something, the antibodies were very high and everything. And then we noticed about a month later that my hair was growing back a lot better, so the best it’s ever grown back and that was since being unwell, so since my body was kind of fighting off something very big, like it was, like stopping, y’know it stopped attacking my hair and it was attacking whatever illness I had, so, yeah. We think it could be a reason, but it’s all theory.
It could be exciting when regrowth happened. However, sometimes the hairs fall out again at a later date or, as for Meghan and Elizabeth, hair might regrow in one part but fall out from another area at the same time. Emily and Becky described regrowth as “unpredictable”. Hannah found her regrowth hair came out as soon as she stopped having steroid injections. For this reason, a few people said they weren’t too hopeful about hair regrowth. Emma says she would prefer her alopecia areata be “stable”, rather than a cycle of hair regrowth and then falling out again.

Rapid changes, such as going from having hair to bald patches or no hair and then regrowth, could be overwhelming. For Krista, it was “a roller coaster of emotions within four or five months that I sort of went from having hair to having a little bit of hair to then having to wear a wig and having no hair underneath to then having hair again… that many emotions just hit you”.
 

Although Krista’s hair regrew, the fear of it falling out again has stayed with her.

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Age at interview: 23
Sex: Female
Age at diagnosis: 22
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I think even now obviously the amount of people who said to me “You lose a 100 hairs a day don’t worry about it,” even now I find myself when I wash my hair, I’ll go and check the bath just to make sure it’s not happening. When I get up in the morning, I’ll check the pillow just to make sure there’s not a load of hairs and there’s been a couple of times when I’ve washed my hair and there’s probably been about ten hairs in the bath and I, I’ve panicked straight away thinking it’s happening all over again or I’ll be straightening my hair and bits of my hair will fall out and I don’t just think to myself ‘it’s your natural hair cycle’, I think ‘oh my God I’m getting alopecia all over again’.

And I imagine that’s not how you used to think before-

No.

-you had your first patch, so it’s quite different ways-?

Yeah I’d see hair, I’d straighten my hair and I’d wipe hair off my trousers or and it was nothing. But now if I straighten my hair and I feel a bit of hair tickle my neck it fills me with panic and I’d say I straighten my hair every day and whilst I’m straightening it probably three, four hairs land on me and it still now fills me- and I think it will I think for the, even if I’m never ever had an experience with it again I think it’s always gonna panic me. Every time I get stressed I think the first thing that will come into my mind is ‘my hairs gonna fall out again’.
 
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Rochelle doesn’t worry too much as she says her hair always regrows after a while.

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Age at interview: 23
Sex: Female
Age at diagnosis: 14
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When it first happened, I was shocked and crying all the time and then I started to get used to it around 19 because, only because my hair started to grow back. If my hair never started to grow back, I don’t know how I’d be feeling right now. But because I know my hair can grow really long, it grew from like, oh, it was about, how short was my hair? Maybe like four to five inches to 12 inches it grew in two years, so obviously I know it can grow. But if I didn’t have my hair right now, I don’t know how I would be feeling. But now I can just chop it off, like, “Yeh, split ends – chop it off, chop it off,” because I know it will grow back. If it went totally bald, I don’t know how I would be feeling right now.
 

Arti’s hair has regrown in the past but she says it’s hard to tell whether that’s still happening.

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Age at interview: 22
Sex: Female
Age at diagnosis: 22
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The first patch was actually in September of 2014 and then the other patches-. When I went to the doctor again it was sort of February 2015 so it was a good couple of months but then actually the, as I said before, the, the previous patch had actually regrown the hair which is why when I initially went to the doctor they said that it was likely to regrow cos they, cos I’d already had a patch which I noticed, that it had all been regrown. So they, they thought it was quite likely to regrow which they’re still saying it may regrow. It’s just that I’ve lost a lot of hair quite consistently now so it’s, it’s hard to sort of see whether it is regrowing cos regrowth actually takes like 3, 4 months to even start to notice the signs of regrowth. So it does take quite a while [laugh]. And considering I’ve lost all the hair sort of quite dramatically, it’s only sort of now that I’d be able to sort of see any signs of regrowth from the injections or steroid creams.
Other symptoms

For some people, there were a few other symptoms related to their alopecia. A couple of people said their bald patches were sometimes inflamed (swollen, redder) and sore. Emma has eczema and finds it tends to flare-up at the same times when her hair falls out. Laurel finds alopecia affects her nails, making them dented and dimpled. Danny’s mum remembers he had flaky nails when he was born but says they are now strong.
 
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When she was younger, Becky thinks her bald patches were affected by dermatitis (eczema). It would sting to put steroid treatments on the skin.

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Age at interview: 23
Sex: Female
Age at diagnosis: 14
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And did you say that when you were younger, when you’d have patches of areata, that they’d be sore and bumpy?

Yeah. When I was younger they were a lot, it was a lot more of a skin thing. I don’t know why it looked it quite like-. Cos at first they thought it was like a dermatit-, well, I thought, mum thought it was like a dermatitis-y thing because it used to get quite flaky, dry, sore, raised spots and, like I say, when I used to put the steroids on it did used to sting. So I can see how people would think it was linked with a skin thing. But it doesn’t, as I say, as I’ve got older it doesn’t do that any more.

What sort of age do you think that started to change?

Probably about 19, 20. Yeah, about age 19, 20ish that stopped. It used to itch as well. I can remember it itching because it was flaky and sore and dry, it used to itch. Well it doesn’t itch any more when it falls out. It’s not-, you don’t notice it as easily because it’s doesn’t itch and it’s not spotty like that. But it used to be really bad. 
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