Grace

(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 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-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 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.

Age at interview 18

Gender Female

Age at diagnosis 10

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.

Age at interview 18

Gender Female

Age at diagnosis 10

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.

Age at interview 18

Gender Female

Age at diagnosis 10

Grace knew someone at school who also had alopecia and they would giggle’ about it together.

Age at interview 18

Gender Female

Age at diagnosis 10

When she went to Reading festival with friends, Grace didn’t wear her wig and felt very supported by her friends.

Age at interview 18

Gender Female

Age at diagnosis 10

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.

Age at interview 18

Gender Female

Age at diagnosis 10

Grace found wearing her wig to the gym was uncomfortable. She often wears a headscarf instead and finds some people stare at her.

Age at interview 18

Gender Female

Age at diagnosis 10

Visiting a shop to choose a wig was like a pamper session for Grace.

Age at interview 18

Gender Female

Age at diagnosis 10

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.

Age at interview 18

Gender Female

Age at diagnosis 10

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.

Age at interview 18

Gender Female

Age at diagnosis 10

A rumour went round at school that Grace had cancer.

Age at interview 18

Gender Female

Age at diagnosis 10

Grace’s doctor recommended she order minoxidil online and advised her on which strength product to go for.

Age at interview 18

Gender Female

Age at diagnosis 10

Grace says oral steroids helped stimulate hair regrowth, but that she could have only a short course because of risks and side effects.

Age at interview 18

Gender Female

Age at diagnosis 10

Grace doesn’t want to try topical immunotherapy. She thinks it would be more difficult for her than the steroid injections were.

Age at interview 18

Gender Female

Age at diagnosis 10

Grace had steroid injections for her patches. Her doctor stopped these when the size of the bald areas continued to increase.

Age at interview 18

Gender Female

Age at diagnosis 10

Grace found information online about research into new alopecia treatments. Her dermatologist was interested but couldn’t prescribe them.

Age at interview 18

Gender Female

Age at diagnosis 10

Grace talks about her transition from paediatric- to adult- dermatology.

Age at interview 18

Gender Female

Age at diagnosis 10

Grace developed alopecia after having pneumonia as a child which she thinks shocked her system.

Age at interview 18

Gender Female

Age at diagnosis 10