Many people said their doctors offered them treatments. Some of these involved going back to see the GP or dermatologist several times to get prescriptions or, in the case of steroid injections, for the procedure to be done. Most people felt that, overall, the treatment options for alopecia areata were limited. Some weren’t told about treatment options by their doctors and only knew about them through doing their own research.
Meghan sometimes looks up treatments online, but she then has to go to her doctor to find out if she is eligible to try it and if it’s available. Not everyone wanted treatments but some still wanted to know what could be offered. Treatment options weren’t discussed in Emily’s early appointments which left her feeling “lost because you’ve been given a diagnosis of something and then no information on what you can do about it.” Annie X remembers being told by her dermatologist that “there’s nothing we can do” other than for her apply steroid creams.
Many talked about how treatment decisions were made. Some said that decisions about what treatments to try were made by their doctor and that they had little input. Rosie was fine with this as “obviously they’re professionals and they know what to do in each situation.” Emily thinks treatments offered depend on “how serious your dermatologist deems losing your hair” rather than necessarily how the person with alopecia feels about it. She says, “If my dermatologist thought that losing your hair was the worst thing in the world then I’d have probably been referred [for steroid injections].”
Others had more of a role in choosing treatments. Although Grace feels that the list of potential treatments is “quite finite at the moment”, she likes that her dermatologist asks her which ones she would like to try and which to “rule out”. Grace also sometimes takes in a list of treatments she’s heard about online to ask her dermatologist. A few people had continued to have alopecia treatments that they didn’t want because they didn’t know of alternatives or feel confident speaking up.
Some people were hopeful about future treatments being developed and said they would be willing to try them if success rates were high. Emma thinks it’s important to weigh up side effects and the other impacts treatment can have. Her current attitude is that she “wouldn’t dedicate my whole life to being on a drug that’s just going to keep my hair whilst I’m on it.” Several of the people we talked to said they were accepting of their alopecia and not interested in treatments. Having frequent medical appointments and using treatments made them feel they were ‘ill’ or that there was something ‘wrong’ with them, and they felt happier without these.
What makes a ‘good’ medical professional for alopecia?
Young people wanted their doctors to be knowledgeable about alopecia and willing to share information to help them understand the condition. Some people had been signposted to online resources about alopecia. This could be helpful, but some of the websites Hannah saw were out-of-date. Krista found it dismissive as she would have liked the doctor to go through the information with her in person.
Hearing that doctors don’t have answers about how long alopecia might last or how much hair they would lose could be hard. At the same time, some said it wasn’t helpful being offered “false reassurance”. Sometimes people disagreed with what their doctors said. Rochelle, Arti and Annie Y disagree with their doctors who said their alopecia was caused by stress.
It was also important to many young people that their doctors be friendly. ‘Small talk’ can build rapport and make a huge difference to how comfortable and confident Emilie feels in an appointment. Grace liked that her dermatologist was straight-talking about her limited treatment options but also considerate when the steroid injections got “too much”.
Having seen different medical professionals or going to several dermatology departments meant it was possible to compare between them. Some people said they got on well with their doctors. However, not everyone had positive experiences with all of their medical professionals. Imogen estimates she’s seen about 40 doctors about her alopecia areata but feels “they’re not very helpful” as she doesn’t think the conventional treatments work for her.
Mental health support
Most people weren’t offered emotional support, but a couple of people had asked for professional help or a referral for mental health and self-esteem concerns related to alopecia. Grace’s dermatologist had offered support to her and explained that alopecia can psychologically affect “people of your age”. Michael’s mum helped him push his dermatologist to be referred to a NHS counsellor but, because of waiting lists, he ended up seeing one privately. He said it helped him to feel “calmer”. Kayla had talked to a counsellor as she felt that she should, but found her “strategy of putting things to the back of my mind” worked better for her. Many people felt doctors should be more aware of the emotional impacts of alopecia, including the effect on friendships and social life, and to raise it in appointments.