Viewing 25 posts - 1 through 25 (of 25 total)
  • Alopecia
  • Ferris-Beuller
    Free Member

    I have a family member who has just developed this and has lost all her hair pretty much overnight. My heart goes out to her, it really does. She’s distraught, the poor girl.

    The quacks have absolutely no idea how or why, test after test has come back fruitless. We’re going down the private route, but i’m not holding my breath to be honest.

    Has anyone got any experiences with alopecia? Any full recoveries from it??

    I’m at a bit of a loss.

    trout
    Free Member

    Yes I had it when I was 17 ended up looking like a monk or max wall
    Drs said it was a nervous disorder and nothing they could do dont worry about it it will most likely grow back . Great news to tell a 17 year old male in the prime wild oat season

    a year later I changed jobs to working in a quarry and had to wear hard hats and might have been less stressful sure enough it grew back over the next year or so

    That was 40 years ago but now male pattern baldness has struck

    maccruiskeen
    Full Member

    Any full recoveries from it??

    Not direct experiences but my GF is working with Alopecia suffers just now, some as young as 8 and 9 years old. Its mystery as to why it goes or when and why it comes back. In all likelihood we’re giving the same name to a number of conditions and causes.

    But yes it can come back – as quickly and mysteriously as it goes really.

    Two things to do in the meantime – get a dermatologist referral and, by no means trivially – get an appointment for a wig fitting. The dermatologist should be able to recommend someone but her own hairdresser might be able to recommend someone sooner that would get the ball rolling quicker. Some are really shit-hot and worth their weight in gold, not just because they can give some of your identity back but they probably see more alopecia patients every week than the docs do all year and will give some useful insight in to what can be done, who can help and and whats to come.

    Female hair loss is much, much more common than you’d think, its something we’re broadly unaware of because there are some really good wig makers out there. It can be a dear do but certainly here north of the border you can get NHS funding for properly good ones (if you fight for it)

    Ferris-Beuller
    Free Member

    Thanks for the replies…so far! maccruiskeen, i dont suppose your GF’s company has a website i can look at?

    Roger that with the wig fitting and dermatologist. I shall pass the details on.

    Ta!

    scaled
    Free Member

    No help i’m afraid but…

    I’m at a bit of a loss.

    Really? 😀

    maccruiskeen
    Full Member

    Thanks for the replies…so far! maccruiskeen, i dont suppose your GF’s company has a website i can look at?

    She’s a filmmaker – an observer on the subject rather than an expert (although she did lose a lot of her own hair briefly when she was younger, after getting ill while working in India),

    When she gets home (she’s filming with someone today in fact) I’ll get some pointers from her. Theres a company makes really, really good ones, not just for look but practicality – go out in a hurricane, go swimming and it stays put. They work through a network of approved hairdressers so if I get the info on them then through them you should be able to get a good local contact.

    Ferris-Beuller
    Free Member

    Great, cheers lad!!

    dbcooper
    Free Member

    This is an excellent book on Alopecia by a friend of mine, he is a sufferer and a Prof of Pshychology at Nottingham Uni. Very approachable, intelligent and knowledgable on all thing Alopecia.

    http://www.amazon.co.uk/Coping-Alopecia-Nigel-Hunt/dp/0859699102/ref=sr_1_7?s=books&ie=UTF8&qid=1405947607&sr=1-7&keywords=nigel+hunt

    maccruiskeen
    Full Member

    Heres the update:

    The wig company I was talking about is called Freedom Wigs – they’re the ones that have a special custom fitting process so they stay totally put if you’ve got a bit of an active lifestyle. Big money – like you could buy a bike for that money – so maybe not the first step. However their network of specialist are often fitters are alopecia sufferers themselves so a good source of advice.

    Cheaper acrylic wigs are available that, if someone good fits/cuts/styles them and gives good advice on using them, means theres a reasonably quick and convenient way of at least getting on with life while you wait for result/diagnosis/treatment. Your local hospital should also have a group for alopecia sufferers and theres a chance there to meet others and get and share advice as to who offers what locally.

    Rscott
    Free Member

    One of my good Friends (female) developed Alopecia 3 years ago at 23.

    To this day she has never grown any hair(that we know of) she has now gotused to it and so have we. but meeting new peopleis always intresting as they react in very different ways.

    She tried the acrylic wigs and suffered with heat rash on her head and sayed they were uncomfertable and resorted to wearing a hat of just shoing of her perfectly smooth dome. She has a wig now that is made of real hair in the same syle her hair was, the only thing you can notice is she has no eye lash’s, and her eye brows are drawn on but with alot of younger women opting for HD brows (or what ever there called pretend i don’t know) this really isn’t noticeable. She has been a freind for a long time and seeing how she coped was hard, she was destraught and upset for months before coming to terms with it, even with massive support from her friend and family, and has in my eyes become a even more attractive woman for it.

    She does alot of fundraising for alopecia UK, who have helped her alot along the way. I wouldn’t want any one to suffer from this but we allmake jokes at my expense as im receding and balding, that her hair might grow back but mines just going get worse.

    solamanda
    Free Member

    Email me, email in my profile.

    mrblobby
    Free Member

    Sounds awful. No advice here, but always thought Joanna Rowsell to be a good inspiration if she is looking for any.

    stoffel
    Free Member

    We’re going down the private route, but i’m not holding my breath to be honest.

    Don’t. It will be an utter waste of time. I wouldn’t waste your money.

    I have mild Alopecia Barbera; it affects my ‘beard area’, or chin, jaw and face cheeks. Hardly noticable unless I don’t shave for a couple of days. Nothing that really bothers me, although I can appreciate head hair loss in women as far more socially devastating; my wife lost all her hair during chemotherapy, and I’ve seen how upsetting and demoralising it can be for someone. For me, the situation isn’t that bad, and it’s less extensive than it was, just a couple of patches now. I did have a small patch on the back of my head, at the top of my nech, but that seems to have fully grown back too. I tried some sort of steroid cream, but got bored with it as I really didn’t think it did anthing. All sorts of ‘remedies’ out there, including using onion juice etc. The bottom line is that it’s apparently an immune system problem; the IS is ‘fooled’ into ‘thinking’ that hair is a foreign body, and expells it and the follicle. Somethinglike that anyway. It has been linked to stress,which can cause all sorts of autoimmune issues.

    I feel for your relative. I really hope it sorts itself out, and she can have her hair grow back again. But maybe she can take a bit of comfort from my wife an other women; ‘it’s only hair. I’ve still got my life’.

    maccruiskeen
    Full Member

    Forgive the bump but I mentioned ^up there^ that my GF was making a documentary on the subject – well it airs at 8pm tonight and its ace. It was commissioned by STV so is only being broadcast north of the border (8pm STV) but I should also be viewable online on the STV Player. I think the player will only stream live, the programme won’t (as far as I know) be available afterwards on catchup.

    maccruiskeen
    Full Member

    I was wrong – it is available on catchup

    Here

    Can anyone let me know if this is accessible south of the border – you need to create a login to view but its free

    Drac
    Full Member

    A colleague has this they not sure of the cause either, apparently they don’t always find one.

    She just gets on with it but wears a very convincing wig and anyone who never knew her before hand doesn’t notice. Then other days she just wears a hat.

    cinnamon_girl
    Full Member

    Will try tomorrow night, an interesting topic.

    Tom_W1987
    Free Member

    A friend of mine had this, it was stress, it’s never been quite the same but it did grow back to about 85 percent of it’s original thickness.

    Send her to a trichologist.

    john_drummer
    Free Member

    Not alopecia but the results are the same, my wife has had cancer and the chemotherapy has led to total hair loss. She has some fantastic wigs now, she prefers them to her own natural hair. Bit of peach fuzz coming back now but she says she’ll keep it short & stick with the wigs

    Hair Plus in Victoria Quarter (10 County Arcade) in Leeds are fantastic if you happen to be anywhere near. Her favourite brands are Hot Hair and Natural Image; Raquel Welch & Joan Collins also have good ranges.

    cinnamon_girl
    Full Member

    I’ve lost a considerable amount of hair as well as all of my eyebrows and many eyelashes due to a thyroid condition. As a women I found this very upsetting and became self-conscious thus developing even more self-esteem issues.

    Recently I took the plunge and spent a lot of money on having eyebrows ‘replaced’, a big decision when I didn’t personally know anyone that had undergone the procedure. It’s effectively the same as having a tattoo and several appointments were needed with a very patient, experienced therapist who’s worked with alopecia sufferers.

    Am thrilled with the very natural looking result and if any ladies would like to know more or ask questions I’m happy to help and e-mail is in profile.

    maccruiskeen
    Full Member

    Hi CG. If you can’t get to view the documentary online (STV’s player can be a bit frustratingly clunky – it took me three attempts to set up a username/password) theres also an article that the Herald did that is pretty good here

    cinnamon_girl
    Full Member

    maccruiskeen – thank you for the link, will have a read later when hopefully I can view the documentary.

    Just a general point that applies to ladies – ferritin needs to be at a decent level and not the bottom of the range where, in my experience, doctors think is an acceptable level.

    iffoverload
    Free Member

    If it happened quite suddenly I would try and think of a possible trigger, if something has happened or changed recently.

    I had patches everywhere getting worse, nothing worked,in the end developed a more relaxed attitute to my job,changing my diet slightly and better sleeping habbits worked for me and also felt a lot better.

    mikemorini
    Free Member

    My youngest has suffered from this since about nine years old (now 21).
    Definately stress related in her case, happier she is, the more hair she has. She has one small patch that refuses to grow back, but she’s an expert at hiding it, so it’s not noticable.

    giant_scum
    Free Member

    I suffer the same as Stoffel with the alopecia in patches mostly on my face. As he said it’s one of the many auto-immune disorders. For me it’s not a major issue but I really do feel for those that suffer the full hair loss and especially for females.
    I reckon mine is made worse by stress.

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