Annie X
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Age at interview: 15
Age at diagnosis: 11
Brief Outline: Annie X first developed a bald patch in her hair when she was 11. She was prescribed a steroid ointment but prefers to use alternative therapies such as homeopathy. Annie X has struggled a great deal with the impact of alopecia on her self-esteem and confidence.
Background: Annie X is 15 years old and a secondary school student. She lives with her parents and her sister. Her ethnicity is White British.
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Annie X’s parents first noticed a bald patch in her hair on her scalp when she was 11. She was very upset and tearful, as the main association she had with going bald at that age was of cancer and chemotherapy. Annie X saw her GP who said that it was alopecia areata and prescribed a steroid ointment to put on her scalp. She was referred to a dermatologist and Annie X remembers missing school for the appointment, which suggested to her that it was quite a serious medical problem. The dermatologist said that the hair should grow back within a year and that Annie X should continue applying the steroid ointment. However, as time went on, the patch continued to get bigger and the steroids did not seem to help. Annie X wishes that the dermatologist hadn’t suggested a timeframe for her alopecia areata ending as she feels it gave her “false hope” and meant that she put her life on hold whilst waiting for the hair to return. Between the ages of 11 and 13, Annie X’s hair fell out rapidly and she developed more patches. She took to wearing a bandana to cover the hair loss and then a wig for around 3 months. Some of the pupils in other years at school thought that this was because she had cancer and Annie X experienced some name-calling. Because Annie X’s alopecia has affected different parts of her head at different times, she has had to change strategies for covering up bald patches depending on their locations. She found it both exciting to have a change in hairstyle or bandana colour but also very frightening because she didn’t want to draw attention from others.
It felt “wrong” to Annie X to be putting the steroids on her scalp and she worried that the chemicals might cause more damage. Annie X’s mum began researching alternative therapies for alopecia and Annie X has since tried laser therapy, homeopathy, health kinesiology and hypnosis. Annie X was unsure at first about some of these treatments but says that it has widened her knowledge and connections. She is willing to try treatments that are of low risk to her health and she trusts her mum to be in charge of making these decisions. Annie X’s mum also helps in other ways, such as blow-drying Annie X’s hair so that it covers any patches and allows her to keep track of any changes. Annie finds that the alternative therapies have been helpful to varying degrees. For example, she found hypnotherapy helped after an upsetting incident on the bus when two boys from another school pulled her bandana off and exposed the patches in her hair. This shook Annie X up so much that she was scared to get the bus on her own and would sometimes walk long distances to avoid it. Annie X appreciates that the alternative therapy practitioners talk with her at the appointments about how she’s feeling. She has also seen a counsellor to help with the emotional side of alopecia and the impacts on her self-esteem, such as anxiety about being in public and other people judging her.
Annie X thinks that stress and ill health triggered her alopecia initially. Prior to the first patch developing, she had been having panic attacks and was very worried about her grandfather’s health, all around the time that she was also moving in to secondary school. Annie X thinks that the combination of these things meant that stress built up and caused her immune system to turn against itself. She now tries to avoid unnecessary stress and monitor when things are becoming too much for her. She focuses on taking care of her “inner health” and does not feel the need to go back to the GP or dermatologist because she’s confident that they cannot help. She tries to maintain a healthy diet and lifestyle by staying hydrated and avoiding sugary foods. Annie X is also careful about what she puts on her scalp and hair, using non-sulphate shampoos and mineral water for the final rinse of her hair when she’s washing it.
Alopecia has a huge impact emotionally and socially for Annie X. She gave up some hobbies that she used to enjoy, such as guitar and dance lessons, because her confidence was so low. Annie X finds it especially hard to be at an all-girls secondary school where there is a lot of pressure on physical appearance and with the other pupils “always tossing their hair around”. Annie X thinks that her generation can be particularly judgemental and that this can be fueled by online social media. She thinks that the impact on her self-esteem about her appearance has also played a part in potential relationships not working out. Annie X eventually closed down her Facebook as she felt that appearance pressures meant that she was constantly comparing herself to others in photographs. Since then, she has become more interested in finding her individual style and experimenting with creative make-up. Annie X has also started private one-to-one dance lessons so that she is able to enjoy this hobby without the anxiety of performing in front of other people.
Annie X is very grateful for her family’s support, including covering the costs of treatments and the research that her mum does on alternative therapies. She sometimes feels guilty at the impacts that her alopecia has had for her parents and sister, and hopes to be more financially independent with a part-time job after her GCSEs. Over time, Annie X has become more comfortable talking to others about alopecia and she now tries to spread awareness about it. She finds that most people don’t know what alopecia is or think that it only affects middle aged men. It’s important to Annie X that people realise that it is not a trivial issue of ‘just’ losing hair but that it can affects the whole of a person’s life and how they feel about themselves.
It felt “wrong” to Annie X to be putting the steroids on her scalp and she worried that the chemicals might cause more damage. Annie X’s mum began researching alternative therapies for alopecia and Annie X has since tried laser therapy, homeopathy, health kinesiology and hypnosis. Annie X was unsure at first about some of these treatments but says that it has widened her knowledge and connections. She is willing to try treatments that are of low risk to her health and she trusts her mum to be in charge of making these decisions. Annie X’s mum also helps in other ways, such as blow-drying Annie X’s hair so that it covers any patches and allows her to keep track of any changes. Annie finds that the alternative therapies have been helpful to varying degrees. For example, she found hypnotherapy helped after an upsetting incident on the bus when two boys from another school pulled her bandana off and exposed the patches in her hair. This shook Annie X up so much that she was scared to get the bus on her own and would sometimes walk long distances to avoid it. Annie X appreciates that the alternative therapy practitioners talk with her at the appointments about how she’s feeling. She has also seen a counsellor to help with the emotional side of alopecia and the impacts on her self-esteem, such as anxiety about being in public and other people judging her.
Annie X thinks that stress and ill health triggered her alopecia initially. Prior to the first patch developing, she had been having panic attacks and was very worried about her grandfather’s health, all around the time that she was also moving in to secondary school. Annie X thinks that the combination of these things meant that stress built up and caused her immune system to turn against itself. She now tries to avoid unnecessary stress and monitor when things are becoming too much for her. She focuses on taking care of her “inner health” and does not feel the need to go back to the GP or dermatologist because she’s confident that they cannot help. She tries to maintain a healthy diet and lifestyle by staying hydrated and avoiding sugary foods. Annie X is also careful about what she puts on her scalp and hair, using non-sulphate shampoos and mineral water for the final rinse of her hair when she’s washing it.
Alopecia has a huge impact emotionally and socially for Annie X. She gave up some hobbies that she used to enjoy, such as guitar and dance lessons, because her confidence was so low. Annie X finds it especially hard to be at an all-girls secondary school where there is a lot of pressure on physical appearance and with the other pupils “always tossing their hair around”. Annie X thinks that her generation can be particularly judgemental and that this can be fueled by online social media. She thinks that the impact on her self-esteem about her appearance has also played a part in potential relationships not working out. Annie X eventually closed down her Facebook as she felt that appearance pressures meant that she was constantly comparing herself to others in photographs. Since then, she has become more interested in finding her individual style and experimenting with creative make-up. Annie X has also started private one-to-one dance lessons so that she is able to enjoy this hobby without the anxiety of performing in front of other people.
Annie X is very grateful for her family’s support, including covering the costs of treatments and the research that her mum does on alternative therapies. She sometimes feels guilty at the impacts that her alopecia has had for her parents and sister, and hopes to be more financially independent with a part-time job after her GCSEs. Over time, Annie X has become more comfortable talking to others about alopecia and she now tries to spread awareness about it. She finds that most people don’t know what alopecia is or think that it only affects middle aged men. It’s important to Annie X that people realise that it is not a trivial issue of ‘just’ losing hair but that it can affects the whole of a person’s life and how they feel about themselves.
Annie X remembers times when she could see lots of hair coming out.
Annie X remembers times when she could see lots of hair coming out.
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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.
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Annie X had blood samples taken shortly after being diagnosed with alopecia.
Annie X had blood samples taken shortly after being diagnosed with alopecia.
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Annie X talks about being ill and stressed as triggers for her alopecia.
Annie X talks about being ill and stressed as triggers for her alopecia.
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And have you found that when your alopecia has sort of changed, when different patches have appeared, can you sort of pinpoint certain events that have happened for you at that time?
Not really. Sometimes, I remember I got into a really bad argument in Year Eight and that, that triggered another patch. But I think it was just, I really don’t know, but I think it was just all that stress sort of got so, it built up and built up and built up that my body or immune system sort of twisted it to attack itself, because I was bottling up all the stress. Because I’m not, I am really not very good at talking to people. And I’ve gotten better and better over time. But I’ve, like, I couldn't ever talk to even people like my parents. So, I bottled stuff up and I think that just got twisted. And alopecia was a response to that.
Annie X says it felt “wrong” to use topical steroids. She prefers alternative medicines and is interested in the role of diet.
Annie X says it felt “wrong” to use topical steroids. She prefers alternative medicines and is interested in the role of diet.
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Could you say a bit more about how the steroids made it worse?
Well, we, because it just comes in like a bottle and you-, one of them was Regain, have you heard of that? That’s what men are supposed to use. But, it was just, it felt wrong. It felt wrong like you were putting chemicals on the hair. I think, I personally think it’s about what you put into your body, because obviously hair grows out of your body. So it’s what you put into your body. So if your body is healthy, it helps. But by putting chemicals on your scalp, that’s not helping anything, because it’s growing through and then it’s immediately being attacked by all these harmful, unnatural substances. So by taking herbs and supplements that aren’t medicated, they’re just increase things. Like one of them, I know, increases my absorption level so I could absorb more water. And I know one of them increases my immune system, because it’s an autoimmune condition. So, I’ve had to be careful about my diet, like I can’t eat too much sugar and that’s not like ridiculous, like I am allowed to eat chocolate and stuff. But I sometimes have dark chocolate instead of milk chocolate, just to limit the amount of sugar I’m putting in. And then, I also make sure I eat a balanced diet and lots of protein because protein grows hair. So I am conscious of what I’m eating and you do have to monitor what you put in your body.
Annie X feels very self-conscious. She describes a time when schoolboys pulled off her bandana and she was afraid of going out on her own.
Annie X feels very self-conscious. She describes a time when schoolboys pulled off her bandana and she was afraid of going out on her own.
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Having alopecia really knocked Annie X’s confidence and the thought of performing stopped her from doing dance, which she loved.
Having alopecia really knocked Annie X’s confidence and the thought of performing stopped her from doing dance, which she loved.
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Annie X says it can be difficult telling people about her alopecia, but that they “don’t really mind” once they understand what alopecia is.
Annie X says it can be difficult telling people about her alopecia, but that they “don’t really mind” once they understand what alopecia is.
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Annie X was given the nickname ‘grannie’ because she wore a bandana and felt very self-conscious about people commenting on her hair at school.
Annie X was given the nickname ‘grannie’ because she wore a bandana and felt very self-conscious about people commenting on her hair at school.
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Annie X says alternative treatments, hair products and wigs have cost her parents a lot of money. She is very grateful for their support.
Annie X says alternative treatments, hair products and wigs have cost her parents a lot of money. She is very grateful for their support.
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Annie X closed down her Facebook account because she was comparing herself to others which made her feel anxious and upset. Now she only uses Twitter.
Annie X closed down her Facebook account because she was comparing herself to others which made her feel anxious and upset. Now she only uses Twitter.
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So did you make a decision to close down your Facebook after a while?
Yeah, I decided to close it down just because a) I wasn’t really using it other than to [laughs] stalk at people and look at their photos just like cos I wanted to be like them. But then it also upset me because I couldn't be like them for obvious reasons like I couldn't dye my hair blonde or I couldn’t dye my hair black or I couldn't curl my hair or I couldn't straighten my hair. And I remember everyone went through a phase of having like really skinny eyebrows, being really tanned and having really straight hair. And it’s like I can’t be part of that because my hair wasn’t there. I was pale, because I am incompetent with stuff like fake tan [laughs] and I didn't want to, and like I don’t have thin eyebrows. So, it, I just, I wanted to stop so I wasn’t comparing myself to people because it was just upsetting me.