Emilie developed alopecia universalis when she was 4 years old. She remembers feeling very angry about her hair loss throughout her childhood. Over time, and with the support of loved ones, Emilie has grown more confident and accepting of having alopecia.
Emilie has had alopecia since she was 4 years old. She noticed clumps of hair on her pillow one morning after she woke up and, after that, her hair loss was quite rapid. Emilie’s current diagnosis is alopecia universalis. Her hair loss affects her scalp and eyebrows as well as other areas of body hair such as on her legs. She is hoping that she won’t lose her eyelashes but she is aware that this may be a possibility in the future. Emilie doesn’t know exactly what caused her alopecia but she thinks that genetics plays a part. She also finds that her hair falls out more when she is stressed.
As a child, Emilie remembers having blood tests taken as doctors tried to work out whether there was another underlying health condition causing her alopecia. She remembers seeing a dermatologist when she was little; she got on well with the dermatologist and felt that he knew her well. However, she now tends to see lots of different dermatologists and it can be frustrating having to re-tell her story at each appointment. Emilie appreciates when her doctors are honest about the fact that her hair may never grow back. More recently, Emilie has talked to her dermatologists about ingrown hairs on her legs. She feels embarrassed about showing her doctors the skin on her legs because they are quite scarred from where she has picked at the ingrowing hairs. Emilie’s dermatologists have given her various creams for her legs but nothing has helped that much so far.
Emilie felt very angry about her alopecia when she was a child, partly in response to other pupils making nasty comments. She recalls that the other pupils would ask her if she has cancer and bully her for her hair loss. Through emotional management classes, Emilie learnt techniques for responding. She thinks that often people asking such questions are very ignorant of alopecia. Emilie has found humour to be important when making new friends and she finds meeting people easier now that her friendship group has also matured. Emilie’s school teachers in both primary and secondary school were supportive. Some teachers in particular were especially kind to her whilst she was experiencing bullying and other emotional difficulties. In turn, Emilie helped to look out for other kids at her school who were being bullied or in need of someone to talk to.
Emilie likes to express herself through her clothes and particularly a vintage-retro style. She doesn’t like to wear wigs as she finds them itchy and uncomfortable. Emilie loves doing creative activities such as drama, singing, dancing and art, which she finds help express her feelings and boost her confidence. Her advice to other young people is to be themselves and to feel comfortable in experimenting with their style (e.g. through clothes, make-up and other accessories), whether or not this includes wigs.