Lots of people had wondered ‘why do I have alopecia?’ Most people we talked to weren’t born with alopecia. Instead, they had lived part of their life having and growing hair, which then started to fall out. An exception is Danny who was born without hair and hasn’t grown much of it since. His mum was told his alopecia was due to ‘immature hair follicles’ and he hasn’t been back to see doctors about it since he was a toddler.
Most people we talked to had alopecia areata, totalis or universalis. For them, the answers as to why they had alopecia were not clear and this could be hard to hear from doctors. Sometimes doctors had talked about causes (what is happening to make the hair falling out or not grow) and triggers (why did the hair loss start or get worse). Lots of people felt there wasn’t enough research into alopecia areata happening, but were hopeful for more understanding about the causes and triggers as well as for treatments in the future.
Some people talked about genetic predispositions and a few knew of family members who also had alopecia areata or another autoimmune condition. Others said there was no history of alopecia in their family and talked more about something in particular which they thought had ‘set off’ their alopecia, such as a stressful time or an illness. A few talked about a combination of genetics and triggers. Many found that avoiding or removing the trigger didn’t necessarily stop or reverse the hair loss. As Emma explained, it’s “something internal that I can’t change myself” but which “might change itself in time.”
Becky was surprised when she first heard alopecia areata described as an autoimmune condition. Others had heard phrases like this too, but were not always sure what it meant. Sometimes the person had been very young when they were diagnosed and hadn’t been told many details. Some felt that the doctors hadn’t explained the term ‘autoimmune condition’ properly when they were first told they had alopecia areata. It can be difficult to understand how something that happens on or in your skin with hairs can actually be about the whole body system and processes.
Some explanations people had for explaining about alopecia areata as an autoimmune condition include:
- Annie X: “it’s your immune system attacking itself, like your own cells, rather than intruder cells”
- Rosie: “here your immune system effectively thinks that your hair follicles are foreign bodies [and so will] fight it and get rid of it [hairs]”
- Becky: “your immune system is working overtime”
- Emily: “it kills my hair follicles”
Explaining about alopecia areata to others was something that a lot of young people had done. Sometimes they had been asked questions, especially in school, such as “Why is your hair falling out?” and “Can I catch it [alopecia]?” Other times people had stared at them or made a comment. This could be really upsetting, but prompted some people to try and educate others. Emily finds it “difficult to know what level of explanation you need with different people.” Rosie’s been asked questions about alopecia that have spurred her onto looking online for more information and she writes a blog to help explain about it.