After finding a patch or noticing a lot of hair falling out, some of the young people we talked to and their parents booked an appointment with a GP. Others left it a while to see what happened in the hope it would regrow on its own. Some people put their hair loss down to a different reason and weren’t worried about it at first.
Arti thought the patch of bare skin she felt on her scalp was an old scar. Some people thought they had accidentally pulled a patch out, such as when straightening their hair. If the patch didn’t regrow or if more patches developed, they realised there must be another cause for their hair loss. This was usually the point when they went to see a GP doctor or nurse.
A few people looked online about the symptoms of hair loss before they saw their GP.
Some people were diagnosed with having alopecia when they were babies or young children. Their parents had noticed symptoms of hair falling out or, in Danny’s case, not growing. Most of those diagnosed at this age said they weren’t too bothered about having alopecia as children, but started to feel more self-conscious as they got older. Grace was diagnosed with alopecia areata at age 10 and says it went “over my head, these words that I don’t understand.” Kayla’s had alopecia since she was 4 and thinks the word ‘diagnosis’ sounds “so serious” whereas she sees it as “just part of my life.”
Elizabeth says she was “lucky” her bald patches weren’t visible for most of her childhood as “it meant that people didn’t pick on me.”
Others were older when they developed alopecia. Many people said they felt shocked and upset because the hair loss made them look different to the way they were used to. Meghan remembers that she “wasn’t ready to tell anyone” or talk about it for some time. Both Krista and Emma cried often in the weeks following their diagnoses. Most people hadn’t heard of alopecia before or, if they had, instantly thought of losing all their hair and felt scared. Emily remembers her GP nurse had to look up the condition which gave her “the impression that it wasn’t that common.” In contrast, Becky’s doctor diagnosed it almost immediately which reassured her “it might be a bit more common than you’d think.”
Others said they weren’t fazed by a diagnosis of alopecia. Rosie didn’t see it as a “big issue” or “much of a bother”, but she did find it intimidating going to a hospital to see a dermatologist. Ben wasn’t worried about small bald patches at first but found it more difficult as patches got bigger and merged.
Many said they weren’t given much information when diagnosed with alopecia. Emily has alopecia areata and says it was ‘disconcerting” to be told that you have an auto-immune disease and then left without support. She took to looking online for more information to make sense of the diagnosis.
Rosie says her GP was really useful and knew a lot about alopecia areata, which he explained to her. Sometimes the GP said they would refer the person on to see a dermatologist (skin specialist) who often confirmed the diagnosis. The wait for this could be long and some found they had lost a lot more hair by the time they saw a dermatologist. Rochelle was given a leaflet to read while she waited for her dermatology appointment to come through, but says she would have preferred her GP talk her through it.
Key questions young people had about alopecia included:
- Why is the hair falling out (causes and triggers)?
- When will the hair loss stop?
- How much hair will I lose?
- What can be done to stop the hair loss?
- Will the bald patches grow back?
- If patches do grow back, will the hair fall out again?
It could be disappointing to hear that there are no definite answers to these questions. At the same time, some found it unhelpful and dismissive to be given false reassurance that their hair would grow back and there was “nothing to worry about.” While it is true that some people’s hair did grow back, this wasn’t the case for everyone we talked to.
Some people had blood taken at their first appointment or soon after, so they could be tested to see if there was an underlying condition or issue causing the hair loss. Emily’s results came back showing she had low iron in her blood and she was given a supplement. When she returned for a check-up blood tests, the results showed her iron levels were normal but her alopecia patches continued to grow.