Arti

(Audio or text only clips) Arti developed alopecia areata 10 months ago. She had a small initial patch which turned into more rapid hair loss. Alopecia has had a huge emotional and social impact on Arti, though she is coping better now since using hair pieces and wigs.

Arti developed alopecia areata about 10 months ago. Her doctors have repeatedly said that they think she developed alopecia because of stress; however, Arti disagrees and thinks that the alopecia produced stress, rather than being the other way round. Arti thinks that she is more predisposed to having alopecia because of some autoimmune health conditions in her family and because she herself has thyroid problems.

Arti initially thought that her first bald patch was a scar from a childhood injury. She thought it strange when the hair regrew but didn’t think too much of it. A few months later, she discovered other patches on different parts of her scalp. She went to her GP who diagnosed it as alopecia and told her that it would probably go away with time. However, Arti’s alopecia became more extensive and she rapidly lost a lot of her hair. She continued to go back to her GP, taking encouragement from online discussion forums that she should be persistent, before eventually being referred to a dermatologist. Arti was able to get an appointment more quickly because of her parents having private medical cover, but she still had to wait several weeks.

Arti has used prescribed steroid creams and been given steroid injections in two of her bald patches by her dermatologist. Whilst there seems to be some early signs of hair growth from the steroid injections, her hair has continued to fall out elsewhere on her scalp. Arti began to look into wigs by visiting a local shop and posting in an online forum for living with alopecia. She learnt a lot about wigs, including that a partial wig might be suitable because it would allow her to include her own hair. When this no longer covered her hair loss, she bought a synthetic full wig and she has recently been given a real hair wig from her parents which they bought whilst on holiday in India. The cost of wigs is a concern and Arti plans to get an NHS wig eventually; when she first looked into it, she found that the paperwork involved is long and would have caused a delay in getting a wig at the time when it mattered most to her.

Developing alopecia has been very stressful and confusing for Arti. She disliked the way she looked and would spend several hours re-arranging her hair so that others wouldn’t see the bald patches. She struggled with this a great deal and found social situations difficult to cope with. As a result, she wasn’t able to go to her lectures or seminars, which meant that she missed out on valuable opportunities for learning at university. Arti told only a few very close people, such as her parents and her boyfriend, about her alopecia but didn’t let anyone else know for several months. She began telling her friends when she felt more comfortable with wearing hair pieces. She also spoke to her university about the impact on her and was given some practical help with assignments as well as a referral to a welfare representative. Arti wishes that she had spoken to friends and her university earlier and she encourages other young people with alopecia to talk about it, even if they are reluctant at first. Arti thinks doctors and dermatologists should make sure to ask young people with alopecia about mental health and the emotional impacts.

Arti feels her doctors haven’t always listened or taken her concerns seriously.

Age at interview 22

Gender Female

Age at diagnosis 22

I’d probably say listen to the person who’s talking about it a lot more. Because, yeah, as I said before, I feel like they don’t really listen to you sometimes. And what I found quite a bit with my GP is that they thought that just because I’m young, I’m healthy generally that, you know, I will kind of be that way, I won’t really have any problems. But then, you know, you can still have problems if you’re young [laugh]. And so I feel like GPs like to disregard a lot of things quickly and, yeah, I would tell doctors to sort of take young people more seriously in what they are saying about their health cos I think a lot of the young people don’t really like going to the doctors, I know I don’t. So even going to the doctors is a big step. It means that something is actually wrong with you.

Hm.

So yeah, listen to the person.

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Arti used the Alopecia UK website and posted on their forum to get advice about wigs.

Age at interview 22

Gender Female

Age at diagnosis 22

So obviously I found the website itself quite quickly because it’s a huge source of resource. So yeah, so I found the website and I was using it quite a bit in the early stages to find out information because they do have quite a lot of information there, like for wigs and stuff. They have a lot of information about wigs and help about that. And yeah, so I’d been exploring the website for quite a bit, looking for information on it. And in terms of posting on there I posted on there because I was still very confused about the whole wig world and I just felt like I needed some like actual experienced help with it all, cos there’s a lot of different wigs [laugh] and it’s all a very confusing new world. And yeah, like I didn’t know much about the caps which I was quite confused about. It’s like there’s wefted caps and monofilament caps and there’s probably some other caps that I don’t know about. They’re the only two that I remember at the moment [laugh] but yeah, learning about all that, I didn’t really understand what the difference was or whether one was better or one was worse and same with sort of whether a partial hair wig would be better than like a-. Well, I didn’t actually know about partial hair wigs at that point [laugh]. But I didn’t know what to get and I was reluctant to get a wig anyway. So I felt like getting some information and help from people who know would be a really great thing so that’s what I did. And it was really helpful and great, so that was really good.

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At first, Arti’s dermatologist did not refer her for an NHS hair wig because her hair loss wasn’t severe enough. A wig she bought herself cost £100-£200.

Age at interview 22

Gender Female

Age at diagnosis 22

I know I’ve talked about I paid lots of money for this but I know you can get one on the NHS. In terms of trying to get NHS wig I found it was pretty much impossible for me. When I went to the doctor apparently I hadn’t lost enough of my hair when I was trying to get help on the NHS with wigs. They said I hadn’t lost enough of my hair. Apparently I had to lose more than 50% of my hair before I was allowed that. So that’s when I was sort of looking at partial hair wigs. And then after that, when I went to the doctor they sort of said, Although you’re-, you’re entitled to it but you have to fill out all these forms, and stuff and I was just sort of needed it quite quickly so I didn’t bother with that then. I am planning on trying to get the help but I’ve been finding it’s quite difficult and I-, I don’t know if that’s just me, like-. I have a medical exemption card because I also have thyroid problems. Oh yeah, that’s something else also linked with alopecia, I forgot to mention. But yeah, I also have thyroid problems and so I have that a medical exemption certificate but that’s not very helpful and I still got to fill out like a HC1 Form and there’s quite a few other forms to like detail your needs and so yeah, I haven’t got round to that. And you’ve got to fill that out like quite a few times in the year and stuff. So I think because I’m quite happy with my wig at the moment I’ll sort of wait until like a couple of months until I sort of maybe thinking about having a new one and hopefully I’ll get one.

But it was quite annoying when, when I first started moving to wigs that it wasn’t covered by the NHS because, yeah, it’s quite-, wigs are very large purchases which I didn’t realise at all but they are like quite a lot. I don’t know how much the cheapest ones are but I’ve sort of paid like between £100 and £200 which is a lot for me [laugh].

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Social anxiety made going out in the evening difficult for Arti.

Age at interview 22

Gender Female

Age at diagnosis 22

Like as an example, I know, so I said a little bit about my social anxiety that sort of developed. There have been times that like I’ve been arranging my hair, so when I was sort of arranging my hair properly in front of the mirror sort of thing. There were times when I was arranging my hair for like literally an hour and a half, two hours, just doing it again and again and again and again. Sort of getting late to see friends and then I’d be like I don’t want to go see friends. So there was a time, specific time when I was with my boyfriend and we were about to go see friends. And we were already an hour late cos I was arranging my hair and he kept texting them being like, Oh well, we’re going to come soon type of thing and then I was just like, I threw a strop being like, I don’t want to go, just go without me, whatever. And then I got quite angry at him and I know, I apologised to him afterwards but I got quite-, I think I was just taking out my frustration of my hair out on him which I think is very easy to do [laughs] when you’ve, just getting really annoyed and you can’t really blame your hair cos you can’t [laugh]. So yeah. So I did get angry at my boyfriend and, bless him he took it really well and he was, [laugh] he was okay with it all and sort of very supportive and [laugh] yeah [laugh]. But obviously I wish like I didn’t do that kind of stuff but it is good to have my boyfriend around to help me with it.

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Arti talks about washing and freshening up her synthetic wig.

Age at interview 22

Gender Female

Age at diagnosis 22

So the synthetic hair wig you have to buy a synthetic shampoo and conditioner, or just shampoo if you want [laugh]. But yeah, so you just wash it in the sink with cold water. You’re not allowed hot water, hot water’s very bad for it [laugh]. So you just fill up the sink with water, some, yeah, a little bit of water. Put some shampoo on your hands and just rub it through. Soak the water through, soak the wig through the water and sort of rub it through for a bit. It’s really quick. It just takes like a minute or two and then just wash it, rinse it out and do the same with the conditioner. It’s really easy and then you sort of just, I was drying it up in like the shower. So just leave it there overnight and then just put it on the next day, comb it through and wear it the next day in turn. So I’d sort of wash it every two weeks which, I know some people wash it like every month but I was wearing it like almost every day so. It’s a lot less than normal hair. But yeah, between washes I also got a, I’m not sure exactly what it is, I think it’s a synthetic sort of hair spray thing. It’s just something to use like in between washes just to give it a bit more life almost, when it doesn’t really need a wash. So yeah, I was just using that in between washes and sort of freshen it up a bit. And yeah, other than that just combing it every day. I don’t actually have a wig stand. I was just like propping it up. And actually at uni, I have a sort of homemade wig stand that I made out of like a tissue box and plastic bags and a bottle [laughs]. So I was using that. Yeah. I’m not sure what else to say [laugh]. So that was sort of caring for it.

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Worrying about her hair was a big preoccupation for Arti when she was studying and meant sometimes missing lectures and seminars.

Age at interview 22

Gender Female

Age at diagnosis 22

I missed lots of lectures and seminars and stuff. And yeah, so missing contact hours is quite detrimental sometimes. So I didn’t go. So yeah, I was missing out on quite a lot of the learning I suppose although there are resources it’s normally never the same as going to the lecture and learning it with the lecturer that you can ask questions to especially like the seminars as well incredibly useful environments to learn. So me not going to them was quite bad but I felt that I couldn’t go to them. Like, as I said before, I’d be arranging my hair kind of for ages before and like at some point I’d just give up in frustration and just be like, No, I’m staying at home today, not gonna go. Yeah, so it, in terms of other things like just general like essays or work deadlines that I had I wouldn’t say it sort of it affected too much because it was, for me, just the social side which was a struggle. Yeah, so yeah [laugh]. Obviously, as I said, the seeing someone about, at my university about it was really helpful and I think things were looking sort of up from there. Cos also sort of when you’re at university and you’ve missed quite a lot of lectures and seminars, you always feel like a bit like, Oh I’m not sure if I should go back, it’s going to look a bit weird like-, everyone’s going to think oh, she’s back. And, I don’t know, it just feels a bit strange to sort come back after a while of not coming to lectures and seminars but yeah, I think I did sort of come back sort of slowly ish and I did-, I did prefer being like at university and, you know, actually learning along with the lectures and seminars like my, my fellow students [laughs].

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Arti finds it easier to talk to people about her alopecia now that she wears a wig.

Age at interview 22

Gender Female

Age at diagnosis 22

I was finding social situations very difficult because I didn’t want to see anyone and didn’t want anyone to know about it sort of thing so. I think I did sort of get sort of social anxiety which did affect like my studies because I didn’t want to go to lectures. And didn’t want to see people at all and didn’t want to see my friends which was probably a bad thing cos, you know, they could probably have supported me. So yeah, but thankfully I think when I started getting used to the wig a bit more, that sort of disappeared a bit.

I probably should have talked to more people about it I think in hindsight because- I don’t know what my fear was about telling people, about letting people know, like close friends and things, but I didn’t tell them. And I tried to sort of hide it from them which is why I sort of saw them less and-. I think if I had told them then they probably would have been really supportive.

I’ve told quite a few more people now. I think it was after I started wearing full wigs or was wearing my partial wig that I started letting people know. I think maybe that I was hiding under something which made me feel more comfortable sort of talking about it which is again quite strange cos, I don’t know. It’s strange that hiding behind it can give you more confidence [laugh]. But yeah I’ve told quite a few more people. Some, some of my closer friends now and there are more people who know. And actually when I told them, they were more shocked than anything else. They hadn’t realised what was happening at all. And they hadn’t heard anything about the condition and sort of asking questions and just quite interested and, yeah, a bit sorry that I hadn’t told them earlier [laugh] cos they would have liked to know and could have helped me a bit more.

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Arti’s read online about home remedies for alopecia, but would like to try the conventional medical options first.

Age at interview 22

Gender Female

Age at diagnosis 22

Have you ever been offered any treatments that you’ve turned down for any reasons?

The only thing which I’ve turned down-, I suppose I wasn’t directly offered them but like, are sort of home remedies. I’d rather try the medical stuff first and if I sort of don’t get a success with that then I might turn to home remedies but yeah, my mum found out quite a lot of home remedies for me [laugh]. And told me about all the stuff with ginger and rubbing things on your head. And I’d probably be up for trying it if nothing else worked but at the moment like I would rather just stick to, you know, hopefully well-researched medical knowledge. So yeah, yeah, so I’ve not directly turned things down but that’s something which I’m not willing to try at the moment.

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Arti describes having steroid injections and what it was like afterwards.

Age at interview 22

Gender Female

Age at diagnosis 22

I had the steroid injections which was painful [laughs]. It was basically lots of injections. So when there’s a small patch, it’s like lots of several little injections throughout the whole patches. So yeah, it’s quite painful. And it, the dermatologist at the time, he did-, so I think I had seven patches at that point and I think he did, he did two patches and even that he said was quite a lot because they were relatively large, I mean for a bald spot, they were quite large at the time, considering I had quite a lot of my own hair at that point because I was sort of hiding my hair at that point. So there, I had quite a lot of my own hair. And yeah, so that was quite painful. And I think that probably took about 45 minutes. I, but my dermatologist was very friendly and talking to me throughout and sort of making sure that I felt comfortable and he actually brought a nurse in for me to hold their hands [laugh] just to sort of squeeze when it was painful. And it did hurt quite a bit afterwards as well. I remember sort of like arranging my head like when I was in bed so it wasn’t like I didn’t really have pressure on the head in the spots I’d had injections in, cos it was quite painful to lean on. And but obviously it does go away and I don’t know if they worked yet. I think there are little tufts of hair in the two spots that they-, he put injections into.

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Arti’s GP referred her to a counsellor. She says it helped to talk to someone who doesn’t know her.

Age at interview 22

Gender Female

Age at diagnosis 22

Have your doctors ever talked about the emotional and social side of alopecia?

Only when I started bringing it up. So I brought it up with my GP because when I told my university about it, they need evidence. So I went to my GP to get evidence for the fact that I was having social anxiety and then they sort of talked to me more about it and asked me what I was going through and allowed me to talk about it and actually my GP also referred me to a counselling service so I could talk more with someone else as well who’s more experienced in sort of helping you talk about it [laugh]. So yeah. So I mentioned to the doctor but they were helpful when I sort of mentioned it to them. The counsellor was very good. I actually didn’t have that many sessions but they were good for the sessions I did have [laugh]. And it was nice to sort of talk to more people about it, another person about it, get a different perspective. And having someone who doesn’t know me really helps because I feel like I can be more open in talking to them. I feel like, I like to be sort of a stronger person almost in the sense that like around my family and stuff, I don’t like to show weakness. I don’t know why, it’s just something I’ve, I’m just like. But because that I don’t, I wouldn’t like show my very emotional side to them. So I didn’t-, I feel like I was a sort of putting up a shield and I couldn’t really talk about it properly, even though I was talking about it with them, I couldn’t talk about it properly with anyone. So the counsellor was sort of very helpful.

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Arti says she’s been told as much about alopecia as is currently known.

Age at interview 22

Gender Female

Age at diagnosis 22

My GP didn’t say much [laughs] but my dermatologist, he did explain it a bit more. But in terms of sort of triggers, treatments, all that kind of stuff, he-, he did admit that there’s not much that is known about alopecia. And he said that it’s-, that like research going on is all quite new and it’s very much in the open, like-. So yeah, so there’s a lot of things which people say, Oh yeah, this might be linked to it or This might be linked to it, but no one’s really sure at this stage. So yeah, I’m pretty much happy at the fact now that like I don’t know much but there’s not much out there to be known almost. Like if I did take things to be more fact then I’d probably be making things up in a sense, or not making things up but taking things a bit too far in terms of-, like even the treatments that I’ve been having, the injections and the cream, even they’re quite new and then not known to be like hugely effective anyway. And they are looking into more effective sort of treatments but again it’s all quite new. They don’t really know much about it.

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Arti went back to her GP’s several times asking to see a specialist.

Age at interview 22

Gender Female

Age at diagnosis 22

How many appointments did you have with the GP after your initial diagnosis before they gave you the referral?

I think I had about four, so quite a few. Some of them were quite spaced out and I think towards the end I had like two quite near to each other, like kind of, I’ve had enough. Can you please refer me to someone who might know a bit more about it? I didn’t even know it was a dermatologist that I had to see. I didn’t know, cos I didn’t realise it was even a skin condition. I thought there might be some sort of hair doctor. I don’t know [laughs]. So, yeah. I actually-, my parents have private medical for me so luckily I got referred quite quickly. So they referred me through that. But otherwise the GP did say I would have to wait like- I think the waiting list in where I was living was like 5 to 6 months. So it’s quite a long time. I think there’s not too many dermatologists around. And when they are, I think because it’s sort of triage systems so they see your need and they don’t see alopecia as a large need compared to other things. So yeah, I was glad that my parents did have private medical cos I could see someone quicker and it would’ve, it was nice to see someone quicker.

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Arti thinks changing her medication for an underactive thyroid might have been a factor for her alopecia.

Age at interview 22

Gender Female

Age at diagnosis 22

So I have the underactive one. So I just have medicines every day to sort of control it which, yeah. So I just have medicines to control it and apparently people who have thyroid problems are more likely to have problems with alopecia. I don’t know if there’s too much research gone into it but, but there have been sort of correlations between those. Yeah I did ask my doctor about the medication I was having cos I thought that maybe that might be something that was triggering the alopecia. But they, they did actually switch me for a bit to a different one and it was actually causing more problems with my, my thyroid sort of-, because when they did a blood test they said that, This isn’t really working for you any more. So they sort of switched me back to the medicine I was having before. But in the time that I did change my medication it didn’t seem like there was that much difference so it was probably about two, two months ish. So yeah there didn’t seem to be much difference with alopecia. My alopecia was, so my hair was just falling out pretty much the same speed that it was falling out before. So, I don’t think it’s medication but then apparently there might be some links which I’m not really aware of, like in detail what they are but.

Was the underactive thyroid diagnosed before you had alopecia? Yeah?

Yep. So it was diagnosed [hmm] I think like September 2013 or something, so quite a while back. Yeah, so it sort of took me sort of a year to sort of control it almost cos it was always like over-medicated or under-medicated. And so it took me a while to sort of get there which was when my sort of alopecia started coming about which was why I sort of asked the doctor about my medication, whether that was having an effect with the alopecia which is when they tried adjusting it.

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Arti’s been to her GP about feeling physically weaker and achy, but she’s not sure if this is linked to her alopecia.

Age at interview 22

Gender Female

Age at diagnosis 22

Since I’ve been losing my hair, I’ve also, there’ve just been points where I feel like really weak and I get really achy arms and stuff. So I’ve been to the doctor and sort of asked them about that and they said it’s nothing to worry about. Yeah, I think I just have really bad luck with my GPs [laugh]. But I’ve, I get an impression that I have other things that are coming alongside when I have quite a bit of hair loss. So I think there might be something else connected with it but I’ve not really got any help with that yet. So it’s all just been achy points, feeling really weak, sort of fatigue. But yeah I’ve not got any help with it. Yeah.

Have any of the doctors done any like blood tests or anything like that?

Yep the doctors. Yes, when I told them about the achy joints and stuff they ran some tests of like, I can’t remember, it was some tests to see if your muscles are inflamed or something. And all the, I think they ran about 4 or 5 tests and everything came back negative and they said, It’s probably fine. It will probably go away. I don’t do much exercise either which they said like, I did tell them I don’t do much exercise but they said like, It might be like an exercise sort of like, might just pull something, or whatever. But I don’t do much exercise. I didn’t do any exercise when it sort of came about and also thought I might have slept on it funny but sleeping on it funny I mean I had, I’ve sometimes had the aches for like a week and a half, two weeks. It doesn’t feel like, it probably should have gone away if I just slept on it funny. So yeah it’s a bit odd.

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Arti has a family history of autoimmune conditions.

Age at interview 22

Gender Female

Age at diagnosis 22

Could you tell me a bit more about the links with family histories and other health conditions to alopecia?

Yeah. So they, yeah, my dermatologist sort of mentioned a lot of illnesses. The ones which stuck out which I actually had correlations with was rheumatoid arthritis. So I’ve had, people in my family have suffered from that and it’s apparently linked to that. And there was-. Also they believe that alopecia is an autoimmune disorder and my mum actually suffers from multiple sclerosis which is also an autoimmune disorder. So they also think that that might be linked, although people with multiple sclerosis don’t normally have children with multiple sclerosis, they often more likely develop different autoimmune disorders. So that’s something, I suppose. And there’s another one, oh type 1 diabetes. So I’ve had people in my family suffer from that as well. And they, they said that that makes it more likely so I’m not really sure exactly, like all the illnesses or anything, but that’s why my dermatologist said that I’m more likely to suffer from it cos I’ve quite a few people that suffer from those things.

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Arti did some online research about hair loss’ before she went to her GP and was diagnosed, as well as after the appointment.

Age at interview 22

Gender Female

Age at diagnosis 22

I just sort of typed in what I had and looked at it on the Internet. And there was a lot of stuff and I don’t think I kind of made sense of it and that sort of. I think always when you sort of look at things on the internet, it kind of scares you into going to see the doctor [laughs]. So I think that’s what I did [laughs] cos obviously there’s lots of stuff coming up on the internet. And lots of general hair loss, cos I didn’t really know what to type in about patches of hair being lost. I did type that. I think lots of just general hair loss things came up and lots of, you know, remedies or like special shampoos and stuff which would help with normal hair loss but not with alopecia.

Yeah so then obviously when I went to the doctor and they told me it was alopecia, I did more research on that and there is quite a bit on the internet about it. There’s the alopecia charity, UK charity which they have a lot of information on their website.

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Arti thought she felt an old scar on her scalp at first.

Age at interview 22

Gender Female

Age at diagnosis 22

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

Age at interview 22

Gender Female

Age at diagnosis 22

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.

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