Grace
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(Text only clips) Grace has had alopecia areata since she was 10 years old. She has tried various topical treatments, steroid injections and oral steroids but these have not significantly helped. She has heard about phototherapy (light therapy) and is considering trying it in the future.
Grace is 18 years old and a sixth form student. She is single and lives with her parents. Her ethnicity is White English.
More about me...
Grace has had alopecia areata since she was 10 years old. She first noticed some coin-sized bald patches on her head after she became ill with pneumonia. The doctors initially said that the patches of hair loss were a temporary change which she would recover from. She continued through primary school with varying degrees of hair loss and this made her feel very self-conscious. After two years of waiting for the hair to regrow, Grace went with her parents to her GP and was diagnosed with having alopecia areata. She struggled to understand what this meant and does not remember it being described as an autoimmune disease until she was given some leaflets by her GP.
Grace knows that stress is a major trigger factor for her alopecia. The most hair that she has lost occurred after she was bereaved with the loss of a close friend about two years ago. Grace has since been wearing a wig which has helped her confidence improve a lot. She now worries less about maintaining a hairdo and she likes being able to experiment with different kinds of wigs. She prefers to look natural and blend in so she sticks to her natural red-brown hair colour in wigs of different styles. She finds that buying a new relatively cheap wig is a like a “quick pick me up” and compares it to getting a manicure in terms of giving a confidence boost. Her close friends, family and boyfriend have been hugely supportive and she is comfortable without a wig on when with them. She prefers to save wearing her wigs for when she’s going outside and in certain social occasions.
Grace has tried different prescribed treatments for her alopecia, including steroids in various forms: mousse, injections into her scalp and oral tablets. She has also tried some over-the-counter topical treatments such as Regain (minoxidil). The oral steroids seemed to help a bit but she had to stop them after a few months due to concerns about long term steroid use. She may try some of the treatments again in the future because she feels there are not many more options, although she is interested in phototherapy (light treatment). Grace has also been offered topical immunotherapy treatment but turned it down because she thinks that the irritants would be more difficult to tolerate and make her scalp very sore for even longer than the scalp injections had. Grace says that she has a good dermatology consultant who is very honest and discusses treatment options with her. Her doctor is also able to provide emotional support and appreciates the social impact that alopecia can have on the whole of a young person’s life. Grace has been researching online about natural remedies in the hope of inducing hair growth. She tries to have a healthy lifestyle with a good diet and she uses yoga to manage stress.
Grace says that it never occurred to her as a child that anyone else, especially other young people, might also have alopecia. She attended an Alopecia UK event which helped her realise that she was not alone. She found it incredibly valuable to meet other young people and she stays in touch with some of them to exchange support and information. Grace thinks that alopecia can be especially hard for young people because they are often very concerned about their appearance. For example, her red hair was a significant part of her identity to herself and to others, so she felt like she had lost a big part of this when her hair fell out. She used to worry a lot about how other people would view her and what they would think. This made it especially hard to meet new people and she put a lot of effort into concealing bald patches with the remaining hair. Grace had counselling for anxiety and she was able to talk about the impacts of alopecia. She has since found alternative ways to establish her individual identity, for example through increased awareness of her body language and with artistic make-up.
Grace is open about her alopecia and wants to raise awareness about it. She has noticed that strangers tend to treat her very differently when she has been visibly bald and not wearing a wig. She thinks this mainly stems from the misconception many people have in which they assume she has had cancer and chemotherapy. Grace tries to present herself in a way which lets other people around her know that it’s okay to talk about alopecia, although it can sometimes be tricky. One way she tries to “eradicate awkwardness” about alopecia is through social media, like Facebook and Twitter. She has been pleased with the positive responses to her openness about having alopecia from other people.
Grace had steroid injections for her patches. Her doctor stopped these when the size of the bald areas continued to increase.
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Grace had steroid injections for her patches. Her doctor stopped these when the size of the bald areas continued to increase.
Grace developed alopecia after having pneumonia as a child which she thinks “shocked her system”.
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Grace developed alopecia after having pneumonia as a child which she thinks “shocked her system”.
I remember going to my GP and him telling me what it was and stuff, but apart from that I'm not really sure. So, that was probably about two years in to two years into having it, something like that, cos I think those first couple of years were kind of like, "Oh, it'll go away. It's kind of like; we're just waiting for the kind of your body to recover from having this ill-having this pneumonia." So that was kind of the waiting and then this kind of like, "Oh no, there there's definitely something wrong; there's definitely something more than this; just these bald patches appearing," and then that’s when we went to the GP and got told what it was.
Grace talks about her transition from paediatric- to adult- dermatology.
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Grace talks about her transition from paediatric- to adult- dermatology.
I went to the appointment at the dermatology clinic, which is at a completely different hospital, and it was with a different consultant, and it was kind of like, I had to try and explain my story again really, because I had to kind of explain all what…they didn’t even have what treatments I had had, or my past experience was la la la. So, I had to, yeah I had to try and explain them, and they were kind of like, "Oh yeah, there's nothing we can really do," and you just think there’s 'I've come all this way and la la la, to try and see if there's anything they can do.' But I've been told that the next appointment will be with this, the same consultant I had in the children's dermatology clinic, but it is quite disheartening because you think, 'Surely there should be kind of some kind of protocol to kind of help people transition.' Because it was a massive jump being taken from children's to adults, cos you're kind of thrown into the abyss with all the other adults with various skin conditions. So, it was quite difficult, but yeah I'm not on any treatments at the moment.
Did you notice any other differences when you were moved to like the adult dermatology clinics, in terms of like how the staff explained things or…?
Yeah, cos obviously in the children's derm- children’s dermatology clinic, it was all very bright and kind of colourful, and even though, obviously it's not for me as a seven-six-seventeen year old, it almost does make the experience better because you're kind of in this environment that’s been made comfortable for children. So, for someone who's going there a bit kind of nervous, or what's she going to say, what are we gonna what am I going to have done; it was very kind of nostalgic – kind of calming and like, yeah basically nicer. And then to go to this this adult dermatology clinic, it was very kind of dark and gloomy, and I think it was almost…it's probably the juxtaposition of both of them together, is that they probably made the other one look darker, because the other one was so kind of bright and for children and stuff. But yeah it was kind of very much the you're kind of in with the rest of them.
Grace found information online about research into new alopecia treatments. Her dermatologist was interested but couldn’t prescribe them.
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Grace found information online about research into new alopecia treatments. Her dermatologist was interested but couldn’t prescribe them.
Grace doesn’t want to try topical immunotherapy. She thinks it would be more difficult for her than the steroid injections were.
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Grace doesn’t want to try topical immunotherapy. She thinks it would be more difficult for her than the steroid injections were.
OK
So, I knew that the injections would be kind of painful for a short amount of time, and that it might be a little bit sore afterwards, but if you kind of cover it up and we let it heal and stuff it will be fine. Whereas it sounded I don’t know whether I got completely the wrong end of the stick, but this irritant sounded really uncomfortable, and that I would be kind of un-, this sustained uncomfortableness for a long-long amount of time. So, I just really didn’t fancy that [laughs], and I kind of thought ‘is this worth it even if it doesn’t work?’ So, I think the short amount of time that the injections I thought ‘right, OK, I can do this’, compared to the irritant. Well I was like ‘nah, I don’t think this is for me’. The thought of these-, sitting there and being uncomfortable, I don’t think it would be worth it. I'd rather-, and then the steroids and stuff, they were fine because I didn’t react badly to them at all. I don’t even think I noticed kind of the side effects at all, which is very good for me, but obviously might be different for other people. But yeah, it's only really the irritant I've turned down.
Grace says oral steroids helped stimulate hair regrowth, but that she could have only a short course because of risks and side effects.
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Grace says oral steroids helped stimulate hair regrowth, but that she could have only a short course because of risks and side effects.
But then it was a lot of effort to kind of maintain because I was very kind of precautious really cautious of the side-effects of it so. But mostly the weight gain that I knew that could come with it. So, I wasn’t trying to diet or anything at that time, but it made me more conscious of what I was eating to kind of maintain, rather so I couldn’t have what I was eating all the time because I would-, I wouldn’t gain usually but I knew that when I was taking the steroids that that could have made me gain weight and that kind of wasn’t very appealing to me really, cos I used to be quite self-conscious anyway, so to have that on top of the steroids might not be working, and now I've put on weight and self-image I think.
Grace’s doctor recommended she order minoxidil online and advised her on which strength product to go for.
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Grace’s doctor recommended she order minoxidil online and advised her on which strength product to go for.
A rumour went round at school that Grace had cancer.
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A rumour went round at school that Grace had cancer.
How did you cope with that? What did you do or?
I think I didn’t really find out that they'd said this until probably like a year or two later because nobody had even questioned it with me. I think because it was we were so young and they wouldn’t want to like ask me about it, because I think you don’t really know anyone, but it wasn’t until later on when but they probably didn’t even know what they were saying; they're probably, that was probably a rumour that was going round at primary school that they kind of just brought into this new school. Like, oh yeah, as matter of fact, kind of, “Oh yeah, she had cancer,” because they weren't really educated about it.
Grace is ‘open’ about her alopecia and has pictures on her Facebook pages where she is not wearing her wig. She has had positive feedback.
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Grace is ‘open’ about her alopecia and has pictures on her Facebook pages where she is not wearing her wig. She has had positive feedback.
In September, it's Alopecia Awareness Month so for that I put, as my picture, I think it was like 4 pictures of me, like various from Reading, from holiday, like pictures I'd taken of myself or whatever, in this collage with the, “September is Alopecia Awareness Month,” and that got like over a 100 likes, like that’s quite a lot for me, people were liking it because I think-, I've had a lot of positive feedback about it as well, about the way that I handle it, especially on social networking sites.
Over time and with support, Grace has become more confident, despite her alopecia becoming more extensive. Wearing a wig was an important part of her growing confidence.
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Over time and with support, Grace has become more confident, despite her alopecia becoming more extensive. Wearing a wig was an important part of her growing confidence.
Visiting a shop to choose a wig was “like a pamper” session for Grace.
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Visiting a shop to choose a wig was “like a pamper” session for Grace.
So you get go into the consultancy room, and they match you with a colour wig, and then he was like…I think it was slightly too long or something because I was, my hair was quite short at the time cos I've never had it quite, very long, because it had always like fallen out, so I just kind of kept it quite mid-length. And they kind of cut it for me and stuff; and then I had that wig for a little while, and then I'd never been told that I'd be eligible for wigs on the NHS by my GPs, or by my consultant, or anyone. And through the Alopecia UK charity I was… I found out from another girl that I was eligible to go and get a wig on the NHS. So that was quite a long drawn out process cos it has to be applied for through the, what's it called… There's like loads of forms and stuff and then you kind of I got sent to this hair studio, and they were like, "Right, this is, these are the ones that you can have," and there wasn’t I think going from Selfridges to like this little hair studio, was probably quite a bit of a shock cos they were like, "We've got this colour, and we've got this colour, but it's not quite the colour that you want," and you're like, "What… give me whatever you’ve got really."
Grace found wearing her wig to the gym was uncomfortable. She often wears a headscarf instead and finds some people stare at her.
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Grace found wearing her wig to the gym was uncomfortable. She often wears a headscarf instead and finds some people stare at her.
Although she often covers her head, Grace allowed her friends to share pictures of her at a festival without her wig on. The photos went on her Facebook profile and she got a positive response when she used them for Alopecia Awareness Week.
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Although she often covers her head, Grace allowed her friends to share pictures of her at a festival without her wig on. The photos went on her Facebook profile and she got a positive response when she used them for Alopecia Awareness Week.
When she went to Reading festival with friends, Grace didn’t wear her wig and felt very supported by her friends.
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When she went to Reading festival with friends, Grace didn’t wear her wig and felt very supported by her friends.
Grace knew someone at school who also had alopecia and they would ‘giggle’ about it together.
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Grace knew someone at school who also had alopecia and they would ‘giggle’ about it together.
Grace had days when her hair wouldn’t sit the way she wanted it to. She says she would have a ‘teenage strop’ and not want to go to school.
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Grace had days when her hair wouldn’t sit the way she wanted it to. She says she would have a ‘teenage strop’ and not want to go to school.
Grace had to wear a skull cap when working in a hospitality job which she said was “like a comfort blanket” because no-one could see her hair loss.
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Grace had to wear a skull cap when working in a hospitality job which she said was “like a comfort blanket” because no-one could see her hair loss.
Grace stays in touch with another girl with alopecia who she met at an Alopecia UK national event. Talking to her helps Grace feel less isolated and alone.
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Grace stays in touch with another girl with alopecia who she met at an Alopecia UK national event. Talking to her helps Grace feel less isolated and alone.
And yeah I've met one girl that I keep in contact with, which is, I'm so glad that I got that out of that, because I think it, even if it was just one or two people I think it's really, you kind of-, it makes you feel like you're not alone, and you're not the only, I think the big thing for me was that I wasn’t the only young person that was suffering with that, because it felt like I was, and I felt like I was the only person my age that was going through this and nobody else, why me, type of thing, why isn't anyone else why haven’t I met anyone else that has it? Is it, am I the only young person, or is there-, is it only really typical in older people or younger people, type of thing? But you're just kind of wracking your brain and you're like ‘I really need someone to talk about this’ cos obviously I had friends and stuff, but they don’t really understand what it is to have this condition that affects your whole life, like you’d they could talk about it with you, and you could be like, “I feel like this, I feel like that,” but they can never sympathise with it, like it can be never be like, “Oh yeah, that happened to me the other day when I was like this,” and I was like that cos that’s never really how it worked.
So, I think finding that other person to kind of-, we don’t even talk that often, but I think when you do it's kind of like, “Oh yeah, I can chat to you about this and chat to you about that, and you get it.” I think that’s the type of thing, it's that you feel like you're kind of alone in it a little bit sometimes. So, before I contacted the charity I felt very kind of isolated, and like I was the only person in the world that had this, so definitely finding someone else to talk about it was a big deal.