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.
Rosie was nervous about her first dermatology appointment.
- 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.
Annie X had blood samples taken shortly after being diagnosed with alopecia.
Arti’s been to her GP about feeling physically weaker and achy, but she’s not sure if this is linked to her alopecia.
Arti’s been to her GP about feeling physically weaker and achy, but she’s not sure if this is linked to her alopecia.
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.
Biology classes at school and talking to her mum helped Elizabeth understand more about the blood tests she had.
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.
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