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Alopecia (young people)

What help can I get from medical professionals for alopecia?

For those who had medical professional help with alopecia, the main sources were:
  • General Practice doctors (GPs) and nurses
  • Dermatology consultants and nurses (healthcare professionals specialising in skin)
  • pharmacists
Most people had seen both GPs and dermatologists about their alopecia. Usually people saw a GP first and not everyone had seen a dermatologist. Kayla grew up in New Zealand and hasn’t seen a doctor in the UK about alopecia as she was diagnosed when young and didn’t find treatments helped. The difference between GPs and dermatologists was important to some people. They saw dermatologists as having more knowledge about alopecia and able to give a wider range of treatments (including steroid injections). Another important difference for some is that dermatologists can prescribe wigs whereas GPs cannot. Grace thinks GPs should refer onto dermatology clinics (and, ideally, those specialising in alopecia) as soon as possible. Arti says she had “issues with my [GP] doctor in terms of them taking it seriously” and referring her onto a dermatologist. Pharmacists had sometimes advised on over-the-counter treatments (which can be bought without a doctor’s prescription), such as minoxidil.
 

Rosie was nervous about her first dermatology appointment.

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Age at interview: 18
Sex: Female
Age at diagnosis: 12
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It was quite intimidating for me, cos the only sort of bit of the hospital I’d seen before was the A&E Department, so walking around all these wards thinking, ‘Oh, I don’t really know where I’m going.’ And sort of having mum there with me also in the same boat, sort of thinking, ‘Right, I will pretend I know what I’m doing.’ Just so that we both sort of have a rough idea. But, I was quite nervous about it, thinking, ‘What are they gonna say,’ you know, are they gonna tell me that I’m gonna lose all of my hair, cos at this point, I’d only lost a little bit and was losing more and more every day, but still had enough to sort of cover the patch. And I was quite nervous about it. But, it was a really relaxed meeting. And I could just talk effectively, which I always think is good when you have sort of appointments with specialists and doctors where you just feel that you can just talk to them about it, which was definitely the impression I got. 
 
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Arti went back to her GP’s several times asking to see a specialist.

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Age at interview: 22
Sex: Female
Age at diagnosis: 22
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How many appointments did you have with the GP after your initial diagnosis before they gave you the referral?

I think I had about four, so quite a few. Some of them were quite spaced out and I think towards the end I had like two quite near to each other, like kind of, “I’ve had enough. Can you please refer me to someone who might know a bit more about it?” I didn’t even know it was a dermatologist that I had to see. I didn’t know, cos I didn’t realise it was even a skin condition. I thought there might be some sort of hair doctor. I don’t know [laughs]. So, yeah. I actually-, my parents have private medical for me so luckily I got referred quite quickly. So they referred me through that. But otherwise the GP did say I would have to wait like- I think the waiting list in where I was living was like 5 to 6 months. So it’s quite a long time. I think there’s not too many dermatologists around. And when they are, I think because it’s sort of triage systems so they see your need and they don’t see alopecia as a large need compared to other things. So yeah, I was glad that my parents did have private medical cos I could see someone quicker and it would’ve, it was nice to see someone quicker.
Young people visited medical professionals for a range of things, including:
  • getting a diagnosis of alopecia and information about subtypes
  • to check if there are any other health conditions underlying the hair loss
  • to find out about triggers 
  • to get treatments, such as steroids in topical, tablet or injection form
  • check-ups, including to see if treatments were working or about side effects
  • for referrals which a GP can make so that a person can see a dermatologist (skin specialist)
  • for those who want to wear a wig, dermatologists can give prescriptions for wigs
  • advice and treatment for complications associated with wearing a wig (for example, Kayla’s scalp sometimes gets sore and weeps from wearing wigs so her doctor gave her a solution to help dry out her scalp)
  • mental health help for dealing with the emotional and psychological side of alopecia
  • information about alternative and complementary therapies
  • a ‘fit note’ (or a ‘sick note’) for time off or other special arrangements with work, school or university
Some people stopped seeing medical professionals after their diagnosis or after trying a couple of treatments without success. Some felt alopecia wasn’t something that doctors could do much about. Kayla says that alopecia is “not that medical” and, for this reason, Annie X feels “it’s not the doctors’ fault if they can’t prescribe anything”. Others continued to see doctors for alopecia and you can read more about repeat appointments here.

Early medical appointments

The main thing that happened in early medical appointments with GPs was getting a diagnosis and, for many, referrals onto dermatologists. Doctors usually examined the person’s hair and skin. Arti’s dermatologist looked for exclamation mark hairs which are a sign of hair falling out. Most people said they were okay with being examined because they saw it as part of the doctor’s job. Emily was told how big her bald patch was on her scalp. Most people’s GPs made a referral for the person to see a dermatologist, but there could be a wait of several weeks or months before an appointment was available. Michael’s parents paid for him to have private medical treatment and Hannah travelled further so that she could see a dermatologist sooner. Emily was pleased that she only had to wait two days to see her dermatologist. 

Some young people had tests done, such as blood tests, when they first saw doctors about alopecia. Emily’s results came back showing she had low iron levels and her GP thought this might be the cause behind her hair loss. She was given some supplements to take and although her iron levels were at a healthy level when she was next tested, her alopecia continued. Rosie had blood tests taken which came back clear. Her doctors said they were checking for serious illnesses “which opened my eyes a little bit like ‘oh, this could be worse’”. Ben’s doctor ran allergy tests and thought he was intolerant to gluten but cutting it out from his diet made no difference to his alopecia.
 

Annie X had blood samples taken shortly after being diagnosed with alopecia.

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Age at interview: 15
Sex: Female
Age at diagnosis: 11
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I don’t remember much about them, but I do remember I had to go to two doctor appointments. The first one was with just there was one woman in the room and my mum, and my mum basically said, “She’s losing her hair, do you know what it is?” The doctor took one look and said, “Yes, it’s alopecia. There’s nothing we can do. We can give you a prescription for steroids, but there’s nothing else we can do. We’re going to refer you to a dermatologist and we’re going to ask you to have some blood tests just in case it’s for anything else”. So then I remember my mum bursting into tears and I was just really embarrassed because she was just crying in the corner and they had to get another doctor in to say, “It’s probably nothing serious, but we are going to have her tested”. So then I had to go to another doctor’s appointment at the same doctor and they just took-, they took a lot of blood because I remember-, because I’m really bad with blood and blood tests so I was like, “Get away” [laughs]. And they, but they came back and there was nothing, there was nothing wrong in the bloods, so it was just auto-immune.
 

Arti’s been to her GP about feeling physically weaker and achy, but she’s not sure if this is linked to her alopecia.

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Age at interview: 22
Sex: Female
Age at diagnosis: 22
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Since I’ve been losing my hair, I’ve also, there’ve just been points where I feel like really weak and I get really achy arms and stuff. So I’ve been to the doctor and sort of asked them about that and they said it’s nothing to worry about. Yeah, I think I just have really bad luck with my GPs [laugh]. But I’ve, I get an impression that I have other things that are coming alongside when I have quite a bit of hair loss. So I think there might be something else connected with it but I’ve not really got any help with that yet. So it’s all just been achy points, feeling really weak, sort of fatigue. But yeah I’ve not got any help with it. Yeah.

Have any of the doctors done any like blood tests or anything like that?

Yep the doctors. Yes, when I told them about the achy joints and stuff – they ran some tests of like, I can’t remember, it was some tests to see if your muscles are inflamed or something. And all the, I think they ran about 4 or 5 tests and everything came back negative and they said, “It’s probably fine. It will probably go away”. I don’t do much exercise either which they said like, I did tell them I don’t do much exercise but they said like, “It might be like an exercise sort of like, might just pull something,” or whatever. But I don’t do much exercise. I didn’t do any exercise when it sort of came about and also thought I might have slept on it funny but sleeping on it funny – I mean I had, I’ve sometimes had the aches for like a week and a half, two weeks. It doesn’t feel like, it probably should have gone away if I just slept on it funny. So yeah it’s a bit odd.
 

Biology classes at school and talking to her mum helped Elizabeth understand more about the blood tests she had.

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Age at interview: 20
Sex: Female
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I’ve always had a real interest in human biology and so that’s really helped my understanding because if you’re interested in something, you’re gonna know more about it so I’ve kind of always-, so it’s helped my understanding of alopecia as I’ve got older. But when I was seven I knew it was happening to me.

How did you sort of go about learning about alopecia when you were about ten onwards?

I don’t know, I think at the age of ten you kind of start to figure out that you’ve got an immune system and what it actually is and like I’m really lucky cos my mum’s a healthcare professional so my mum kind of explained some stuff to me about it. But it was more me just, I had a blood tests when I was ten and when that came back-, I never got the results for it but I remember when I was-, I remember them going, “It’s just your immune system, it’s-, it’s your, it’s your immune system,” and there being no more to that. And then when I was 15, I remember doing homework on the immune system and me going, “Mum, so-” and kind of going, “With the blood test, were they testing my white blood cells?” and because actually that’s the only way they would have known it was my immune system. And my mum’s like, “Yeah,” and I was like, “Well, why didn’t they ever tell me that?” Like they didn’t seem to give me-, like the hospital didn’t seem to give me a lot of information. And then I started A-level Biology and then we had a discussion on cells and the fact that there’s part of your cell, which I cannot remember what it’s called, that basically let’s your immune system know that the part of the body so don’t attack it and in autoimmune diseases it kind of goes-, people don’t know why but that part of the cell goes and that’s why the immune system attacks it.
Sometimes treatment options were mentioned at early appointments, but others found their doctors had more of a “wait-and-see” approach. Emily remembers being told by her dermatologist that they would “just keep an eye on it” and no other treatment was mentioned, so she didn’t see much point in going back for more appointments. She says that she can get information about alopecia through asking others with it online “at the touch of a button instead of having to make a doctor’s appointment… and then for them to possibly not know because they don’t specialise in it”.
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