Many people said their doctors offered them treatments. Some of these involved going back to see the GP or dermatologist several times to get prescriptions or, in the case of steroid injections, for the procedure to be done. Most people felt that, overall, the treatment options for alopecia areata were limited. Some weren’t told about treatment options by their doctors and only knew about them through doing their own research. Meghan sometimes looks up treatments online, but she then has to go to her doctor to find out if she is eligible to try it and if it’s available. Not everyone wanted treatments but some still wanted to know what could be offered. Treatment options weren’t discussed in Emily’s early appointments which left her feeling “lost because you’ve been given a diagnosis of something and then no information on what you can do about it”. Annie X remembers being told by her dermatologist that “there’s nothing we can do” other than for her apply steroid creams.
Emily explains why she’s not currently interested in seeing doctors again about her alopecia.
Emily explains why she’s not currently interested in seeing doctors again about her alopecia.
Age at interview: 20
Sex: Female
Age at diagnosis: 19
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I only went back to get another blood test to check that my iron levels were back up, and after that I thought I know what the treatment options are. I know that you can have like injections in your head, and I didn’t really fancy having injections in my head. And a lot of the other treatments would affect me in other ways and would have bad side effects. So I thought, I’m healthy, you know like the only problem is that I’m losing my hair, it’s probably best to just leave it and let it do its thing instead of having something that will interfere with me in other ways. So I only went back to get that blood test done to check the results and apart from that I haven’t really been back.
Are you still taking the iron tablets as well?
I’m not ‘cos they, it was quite a high dose so you take it for a short amount of time. And then when your iron levels are back up you just need to make sure that you keep eating iron, but I’m not on the supplements any more, but I do have to watch what I eat.
Rochelle was given a steroid cream at her first and only appointment with a dermatologist. When this didn’t seem to work, she called the department and was told to stop using it but she wasn’t given a follow-up appointment.
Rochelle was given a steroid cream at her first and only appointment with a dermatologist. When this didn’t seem to work, she called the department and was told to stop using it but she wasn’t given a follow-up appointment.
Age at interview: 23
Sex: Female
Age at diagnosis: 14
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I think they probably asked [laughs] “Do you have diabetes?” the usual stuff in your family but no, they just had a look. Obviously I think they could see it, no, they just had a look, “Oh yeh, it’s alopecia” and that was it. “Oh, I’m going to give you this,” they probably prescribed me with the same things they prescribe their 10 other people they’ve seen before or so, that’s what it is. They weren’t interested at all, no way was they interested. I remember they just gave me this stuff and after a while they were just like, “Stop using them” and that’s when I was like ‘alright, Rochelle, you're going to have to do something about this yourself’ and that was it. But they wasn’t interested at all.
No ‘come back for another’, no. Not a ‘maybe you should try this’ or nothing, they just said “Stop, stop using it” and that was it. When I think about it now I was thinking ‘wow, you guys are harsh’ but back then I was like ‘let me just stop using, let me try a different thing,’ maybe cos too many things going on in my mind, that I just want to get my hair back that I didn’t think about the way I was actually being treated.
Many talked about how treatment decisions were made. Some said that decisions about what treatments to try were made by their doctor and that they had little input. Rosie was fine with this as “obviously they’re professionals and they know what to do in each situation”. Emily thinks treatments offered depend on “how serious your dermatologist deems losing your hair” rather than necessarily how the person with alopecia feels about it. She says, “If my dermatologist thought that losing your hair was the worst thing in the world then I’d have probably been referred [for steroid injections]”. Others had more of a role in choosing treatments. Although Grace feels that the list of potential treatments is “quite finite at the moment”, she likes that her dermatologist asks her which ones she would like to try and which to “rule out”. Grace also sometimes takes in a list of treatments she’s heard about online to ask her dermatologist. A few people had continued to have alopecia treatments that they didn’t want because they didn’t know of alternatives or feel confident speaking up.
Grace found information online about research into new alopecia treatments. Her dermatologist was interested but couldn’t prescribe them.
Grace found information online about research into new alopecia treatments. Her dermatologist was interested but couldn’t prescribe them.
Age at interview: 18
Sex: Female
Age at diagnosis: 10
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Then I kind of Googled it and I didn’t even realise there was this whole world out there of kind of like papers and research into these drugs that haven’t yet been released. So, then I found myself doing this research into these drugs, and then going to my consultant and saying, “Can you like can you give me this? I've seen this on the internet, can you give me this?” And she's like, “I haven’t even heard of that, let me Google it.” Googled it and then she was like, “Oh, it's in this well regarded medical journal, so it must be pretty serious, they seem to be looking into it, but there's noth- there’s nothing I can do now, I can't justify giving you a medicine that’s meant for blood pressure to treat your alopecia, because there is this one in a million person that has had miraculous regrowth.” But yeah, I think the freedom of having- of being able to kind of have a look and snoop around and see what everyone, what is actually going on in the field of medicine behind what this GP or what this consultant has said to me, was kind of really freeing and kind of-, even though I couldn’t have it, I think it was comforting to see that there was other things out there that weren't necessarily being offered to me right now, but that could be offered to me in the future.
Becky and her mum discussed the side effects of different treatment options, such as steroid tablets and injections.
Becky and her mum discussed the side effects of different treatment options, such as steroid tablets and injections.
Age at interview: 23
Sex: Female
Age at diagnosis: 14
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Did your doctor give you any treatment at that stage or was it just sort of the referral to dermatology you had to wait for?
It was referral. I did wait for referral because they told me that it’s treated with steroids. But mum wanted to discuss it because of the effect that steroids have. So, because obviously when you’re younger, you just want to sort the problem out, so you’ll take anything. Whereas mum wanted to take me away and explain why she didn’t think tablets were right or why she didn’t think injections were right. So, they said to me, “It will be-, it’s typically treated with steroids,” but I didn’t have any treatment then. I came away so that when I’d made my mind up in the hospital, after my dermatology-, I knew more about the treatments. And so not straight away. But after my appointment with the dermatologist, that’s when I had my treatments.
Some people were hopeful about future treatments being developed and said they would be willing to try them if success rates were high. Emma thinks it’s important to weigh up side effects and the other impacts treatment can have. Her current attitude is that she “wouldn’t dedicate my whole life to being on a drug that’s just going to keep my hair whilst I’m on it”. Several of the people we talked to said they were accepting of their alopecia and not interested in treatments. Having frequent medical appointments and using treatments made them feel they were ‘ill’ or that there was something ‘wrong’ with them, and they felt happier without these.
What makes a ‘good’ medical professional for alopecia?
Young people wanted their doctors to be knowledgeable about alopecia and willing to share information to help them understand the condition. Some people had been signposted to online resources about alopecia. This could be helpful, but some of the websites Hannah saw were out-of-date. Krista found it dismissive as she would have liked the doctor to go through the information with her in person. Hearing that doctors don’t have answers about how long alopecia might last or how much hair they would lose could be hard. At the same time, some said it wasn’t helpful being offered “false reassurance”. Sometimes people disagreed with what their doctors said. Rochelle, Arti and Annie Y disagree with their doctors who said their alopecia was caused by stress. It was also important to many young people that their doctors be friendly. ‘Small talk’ can build rapport and make a huge difference to how comfortable and confident Emilie feels in an appointment. Grace liked that her dermatologist was straight-talking about her limited treatment options but also considerate when the steroid injections got “too much”.
Annie X says you shouldn’t ‘wish away’ your time in the hope alopecia goes away. She thinks doctors need to be aware of this when they talk about regrowth.
Annie X says you shouldn’t ‘wish away’ your time in the hope alopecia goes away. She thinks doctors need to be aware of this when they talk about regrowth.
Age at interview: 15
Sex: Female
Age at diagnosis: 11
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All I remember is that it was a man and he, both my parents were there, and he said, “It will probably take-”, he said, “It’s alopecia areata which means that patch will probably take a year to sort out”, but what he didn't know was that it was going to be more than one patch and carry on. So, yeah, he kind of gave me false hope, because I remember I was like counting down the months until the year was over and then it just carried on after and after and after a while I stopped counting. Which is another thing I want to say, because I put a timeframe on it – and that was really-, that was really frustrating because I was kind of wishing the days away, but you kind of have to, what I’ve learnt now is that you can’t ever, you don’t ever know when it’s going to stop or start again. So you have to just let it, let it happen and just be patient with it and sort of don’t let it stop you, because for a while I was like, ‘I’m not going to do this, I’m not going to go out, I’m not going to go to parties, I’m not going to buy these clothes, I’m not going to wear these clothes until my hair is back’ and you can’t do that because if that happens for the rest of your life, then you are always waiting to live.
Emily says most of the medical professionals she’s seen haven’t explained alopecia areata in detail.
Emily says most of the medical professionals she’s seen haven’t explained alopecia areata in detail.
Age at interview: 20
Sex: Female
Age at diagnosis: 19
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So what was it like when you saw the nurse the first time and did she suggest anything?
No.
No?
Not anything. I mean she didn’t, she had to look up what it was so the chances of her knowing like the causes behind it, or the treatments were pretty slim. And I suppose also because she was referring me she didn’t need to know that because she was like sending me to an expert. But then even the dermatologist I think she did tell me that it was an autoimmune disease but she didn’t, if I didn’t know what an autoimmune disease was she wouldn’t have explained it to me. And I had to find all that out for myself and it’s kind of good that I knew about that beforehand, but I think not, and I don’t know if there’s an expectation that doctors think that people know about things that the doctors know about, like autoimmune diseases, but I know that a lot of people don’t know what an autoimmune disease, especially, especially in the context of alopecia. And they don’t understand why it could possibly affect your hair. And I don’t know if it’s that it’s considered not important to explain that bit because I suppose we don’t really need to know what’s going on like behind the scenes, or if it’s that doctors expect us to know that kind of stuff. But I think if I didn’t know what it was I would’ve been very confused if I was suddenly told, “Oh you have an autoimmune disease, that’s why your hair is falling out. Off you go,” like. It’s, it’s quite disconcerting. So obviously I had to do all the research on that myself, which kind of yeah it makes you feel quite insecure in where you stand in terms of whether, you’re like, “Am I ill then? Am I sick? Am I okay? Do I have a disease? Like what’s going on?”
Arti says she’s been told as much about alopecia as is currently known.
Arti says she’s been told as much about alopecia as is currently known.
Age at interview: 22
Sex: Female
Age at diagnosis: 22
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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.
Having seen different medical professionals or going to several dermatology departments meant it was possible to compare between them. Some people said they got on well with their doctors. However, not everyone had positive experiences with all of their medical professionals. Imogen estimates she’s seen about 40 doctors about her alopecia areata but feels “they’re not very helpful” as she doesn’t think the conventional treatments work for her.
Rosie’s had good experiences with all the dermatology staff she’s seen.
Rosie’s had good experiences with all the dermatology staff she’s seen.
Age at interview: 18
Sex: Female
Age at diagnosis: 12
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I got on really well with all of the people that I’ve seen throughout the years with dermatologists. They’ve all been really open and friendly and I think that was partially a reaction to how I was as well, because I was so open about my alopecia and very carefree effectively. So they just were very straight and honest with me which I always found really nice. And, of course, if they had to say anything that was you know, kind of bad like, ‘Oh, we’re thinking of putting you up to the next percentage of treatment,’ they would just, they would be really nice about it and phrase it exactly how I’d sort of react to, react well to it. So they were very good at that. I can’t really think of any criticisms, which is quite nice [laughs].
Meghan compares the dermatology staff she had growing up with a dermatologist she saw last year at the first appointment on her own.
Meghan compares the dermatology staff she had growing up with a dermatologist she saw last year at the first appointment on her own.
Age at interview: 20
Sex: Female
Age at diagnosis: 10
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The first dermatology, the dermatology doctor I had, she was amazing like the, the and there was a sister in the ward, who did all my treatment for me. They were absolutely amazing. And I think because they were female they could kind of empathise and like sympathise of what you’re going through.
So like first off, yeah, that was, they were really like, yeah, they were really like supportive it was a friendly face to see every week. But then when I went back last year to a completely different hospital, I felt like he’d, he just didn’t understand anything. I felt like I was like teaching him about my illness because I’d been through it so long and like I said, it was back when I was wearing extensions and he made me just take them all out, straight, straight out. And then he was like I only went to get the cream originally and he was like, “Right, you’re-, I think you need to have injections, I’ll give you the cream as well”. So he pressured me into having injections and then just left me with a nurse in the like- when he was done with it, he was like, “Right, OK you can leave now”, with my extensions in my hair like my hair all up in pain, like scarred at what’s just happened, completely by myself. Luckily the nurse who was female was there and she kind of understood like how I, I couldn’t go outside looking like that and she let me into their staff room and she let me like do my hair again and like she gave me time to go outside again like by myself, that was awful. And they’re my two dermatology doctors I’ve seen, so one was amazing and one was awful.
Hannah’s seen dermatologists in different places and was given conflicting advice about her NHS wig entitlement.
Hannah’s seen dermatologists in different places and was given conflicting advice about her NHS wig entitlement.
Age at interview: 21
Sex: Female
Age at diagnosis: 16
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But then, the annoying thing is, it changes depending on where you are. So, area to area, it will have different rules and it gets really frustrating. Especially people in Scotland, a lot of them get four wigs on the NHS a year and here in England you only get two wigs on the NHS, synthetic wigs, and some people can like write to their local MP and get a human hair wig, kind of accumulated to the same price as two synthetic wigs on, on prescription. But other areas will completely say, “No, you can’t do that”, so it changes, really.
And did you have that difference between where you originally lived and then when you moved here?
Yeah, it was much harder to get wigs where I used to live. Whereas here I was actually offered wigs and also it was-, wasn’t as expensive and it was a lot better and easier. So, I did notice a big difference because I had the opportunity to kind of try two different areas and they were only an hour away from each other, so they’re not a massive different- and there was only a couple of boroughs in between and it’s really weird to see kind of the difference of how it’s dealt with, so yeah.
And where did you first hear that you could get NHS wigs? Cos you said that previously doctors had said you couldn’t?
No, I actually found out from a friend online and she said that she got a wig on NHS and I was like, “Really, how did you do that?” And they were like, “Well, you’re entitled to them”. And so then obviously you look it up and you see that you’re entitled, what you’re entitled to and like you look up all the official charities that say, “You’re entitled to this many wigs,” and all of that. So then we questioned, that’s when we actually questioned the dermatologist and they’d said, “No,” to us. And then I saw another dermatologist and I was like, “Yeah, you were meant to be getting wigs from 16. Weren’t you?” cos I was wearing a wig at the time. So he thought I’d got that from the NHS. I was like, “No, I’ve been buying these wigs”. So yeah, that’s when, y’know, started getting, getting prescriptions, so. But then I only get a free prescription at the moment because I’m on ESA [Employment and Support Allowance] so I’m kind of entitled to that, whereas if I didn’t have any problems, I’d be having to pay prescription, so. Each wig I get, I have to pay for a prescription.
Mental health support
Most people weren’t offered emotional support, but a couple of people had asked for professional help or a referral for mental health and self-esteem concerns related to alopecia. Grace’s dermatologist had offered support to her and explained that alopecia can psychologically affect “people of your age”. Michael’s mum helped him push his dermatologist to be referred to a NHS counsellor but, because of waiting lists, he ended up seeing one privately. He said it helped him to feel “calmer”. Kayla had talked to a counsellor as she felt she should, but found her “strategy of putting things to the back of my mind” worked better for her. Many people felt doctors should be more aware of the emotional impacts of alopecia, including the effect on friendships and social life, and to raise it in appointments.
Emma talks about some of the emotional support doctors have given her.
Emma talks about some of the emotional support doctors have given her.
Age at interview: 23
Sex: Female
Age at diagnosis: 14
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Well, my very first doctor that I saw was the GP. And I was going back, sort of I went back about three times in the past, in the l-, in the space of two weeks just because it was just gradually getting worse. And he was seeing like I was really upset because this was the time when it was just first coming out and you just feel horrible. Like I just remember I cried every-, I cried like, I don’t know, it must have been about six times a day. Cos it was just, you know, every time you look in a mirror, you look at other people with hair and you’re like, that’s what I was saying to him like, “I’m just, I’m depressed.” And I’m not like a depressed person at all. I’m really quite optimistic. And he like, he gave me a hug and he was like, which, you know, you don’t expect from doctors all the time. But I think he just saw how upset I was. And he referred me straight away for a dermatologist. And the dermatologists, like they’ve been brilliant about my skin. But I think about my hair, they’ve just been quite realistic. Which is fine. I’d rather them be realistic. So just saying that, “There are treatment options, but none of which are going to cure it.” Which is like what, it’s what I expected, but I think, you know, it doesn’t leave me with much hope. And, you know, like they check your hair and, or they check your head and they say, “Oh, well, that, that area’s scarred, so there’s probably not going to be any hair, any hair regrowth there.” And it’s a bit like, you know, you know, “W-, is it ever gonna grow back?” And I think cos there’s no answers to it and there’s not many people that specialise in it like sp-, you know, so specifically. So, you know, a lot of the time seeing the dermatologist it was just quite, you know, just, “How are you doing?” More like psychological help and, you know, help with the wigs and stuff.
Arti’s GP referred her to a counsellor. She says it helped to talk to someone who doesn’t know her.
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
Sex: Female
Age at diagnosis: 22
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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.
Emily would like doctors to understand more about the social and emotional side of alopecia.
Emily would like doctors to understand more about the social and emotional side of alopecia.
Age at interview: 20
Sex: Female
Age at diagnosis: 19
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Do you feel like they appreciate the significance of alopecia in your life or-?
That’s a good question. I think my hairdresser probably appreciates it more than the doctors do. Because I don’t know if maybe a lot of people don’t go to get a diagnosis when they are diagnosed, like when they have alopecia because they are embarrassed or whatever. Or if people go and they’re not given enough information about it. But I do feel that especially, even when I went to a dermatologist who must’ve seen hundreds of people with alopecia she didn’t really seem to know what she was talking about. And it, you kind of lose your confidence a little bit because it’s, like if this person doesn’t know what’s going on with me how, how am I ever going to understand what’s happening? But I do think that a lot of doctors don’t, either don’t think it’s important because it’s not like painful or life threatening or anything, and also I think because there’s so much focus on the kind of scientific side of medicine people don’t really understand the social impact and there’s not much documented about the social impact. And especially not the doctors are going to view, they’re not going to go and read something about like people being sad because they don’t have hair. They’re going to read like about the autoimmune diseases and stuff. So yeah, it-, I don’t really expect doctors to understand that kind of thing and to understand the impact of it but I do think it would probably help, especially with diagnosis and with making patients feel a lot more secure about it.
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