Kayla is 21 and has had alopecia areata since she was 4. She grew up in New Zealand and recently moved to the UK where she has started attending a local support group for others with alopecia.
Kayla is 21 and has had alopecia areata since she was 4 years old. She grew up in New Zealand and recently moved to the UK. Up until the age of 10, Kayla was mostly able to hide the small bald patches with the rest of her hair and by being careful about how she moved her head. Kayla’s alopecia had much more of an emotional impact for her as she got older and as the bald patches became bigger. She used Rogaine (minoxidil) in her early teens but stopped because it was unclear whether it was working or if other factors were responsible, as new bald patches developed even as some hair grew back. Much of Kayla’s head hair has now fallen out. She started wearing wigs in her late teens as her hair loss became greater and she recently had her eyebrows tattooed on. Kayla described herself as having accepted that her alopecia cannot currently be cured and she has not visited a GP or dermatologist about her alopecia whilst in the UK.
Kayla’s auntie owns a hair salon in New Zealand and has helped her both emotionally and practically with her alopecia over the years. This included cutting Kayla’s hair when she was younger, finding and purchasing wigs, and applying/removing the wig tape. It continues to be difficult for Kayla and her auntie to find consistently good quality wig supplies and this is particularly pressing as Kayla sleeps in her wigs at night and so their lifespans tend to be shorter. She also uses a prescribed ointment for her scalp as she finds that the wig tape now irritates her skin, making it seep and very painful.
Kayla described some of the ways that having alopecia during her teenage years impacted on her. This included: the upset of comments or behaviour by peers, especially girls, in the catty stage of adolescence; deciding to change secondary schools to start afresh; and her anxiety about telling her boyfriend that she has alopecia. Moving to the UK has meant a number of changes for Kayla, including that she now has to remove and reapply the wig tape herself. Kayla knew only a few people when she first moved to the UK and it was especially upsetting to spend time with those who were very appearance-conscious as they tended to make insensitive, superficial comments about their own hair. She has also found that different employment settings, including in the UK, can bring other sets of challenges. This includes: dress codes of tying back hair for some hospitality jobs; the difficulties of telling colleagues about her alopecia; and negotiating time-off for important appointments (such as for having her eyebrow tattoos), when she needs to let her scalp heal or for personal days when she feels particularly low.
Kayla learnt about a local support group for alopecia in the UK and had attended one meeting so far at the time of interview. She found this experience to be very mixed and emotional as it had been quite depressing but there were also some positive aspects and she planned to go to subsequent meetings. She was keen to learn new things about alopecia and to hear from guest speakers invited to present at the support group. Kayla felt that, prior to meeting other attendees with alopecia, she had been so alone in it. She was also able to offer supportive advice to some other young women who had very recently been diagnosed with alopecia or who were otherwise struggling with alopecia in various parts of their lives, for example, with romantic relationships. She felt that there should be more support available which focuses on young people with alopecia because this can be an especially vulnerable time with a lot of uncertainty about the future.