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CosmicSediment View Drop Down
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Joined: 14/March/2017
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    Posted: 15/March/2017 at 7:37pm
Hi all

I just wanted to introduce myself. I'm a 28 year old female and yesterday whilst at a dermatology appointment for a mole, I happened to mention a persistent itch on my forehead. A few minutes later I had two specialists sit me down to very sombrely tell me I have lichen planopilaris. To be honest I was pretty blindsided - I've had no hair loss whatsoever and no hint of it either, so had no reason to think this innocuous itch was anything to be concerned about. I have to go for biopsies next month to confirm the diagnosis but when I asked the consultant how certain she was about it she pretty much said 100% this is it.

I'm at a bit of a loss just now. I have no idea what's about to happen to me or at what speed, and no clue of how I might respond to any treatment or whether it will have any effect at all. I don't know if its better that I've caught it this early, or its worse because it has more time to get bad. I don't know what to think.

Essentially I'm here out of some kind of desperate need for reassurance. I've had an extremely difficult few years and I've had to fight so hard to get to the position I'm in now, so I very much feel sorry for myself. Oddly this is the thing which is upsetting me the most. I am not especially attached to my hair and I'm not a particularly image-conscious person, so when I imagine myself without hair I don't feel any sense of panic about it. Who knows, this may change when I start to see it coming out. But as I said I'm not so much focused on how I will look, I just am devastated because I feel as if I battled so hard for my life and the only thing I've gotten out of it is this. I'm only 28 years old and I've had little or no chance to enjoy my 20's, I so desperately wanted just a little bit of time to be happy and carefree, but here I am facing this now.

I had to tell everyone at work today as well and to see the sad look in their eyes was gut-wrenching. I don't want to be someone who everyone feels sorry for, I just want to be strong and healthy and have pride in myself.

Anyway, I'm sorry for the long message - I am very overwhelmed at the moment and I hope you understand. If any one has any advice for me I would be so glad to have it

Many thanks for reading
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Kayjay View Drop Down
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Joined: 01/March/2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kayjay Quote  Post ReplyReply Direct Link To This Post Posted: 16/March/2017 at 10:10am
I am like you devastated. I have alopecia arearta and I am so worried about my hair loss loads keeps coming out. I have had hair extensions put in to disguise it. People say I will get better but im so frightened. I have been on sleeping tablets and on anti depressants just so I can function. My anxiety has hit a level now before I was going crazy felt like I needed sedating to get thru life. I am a single mum with a 13 year old son so things can be tough and I work full time.

Try to remain calm if you can research on the internet for sometimes help or sometimes more worry im not sure whats best.

 The conditions are so awful because no one has answers try remain strong keep in touch x
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Pavla View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Pavla Quote  Post ReplyReply Direct Link To This Post Posted: 17/March/2017 at 9:01pm
I am so sorry you've had this diagnosis.  I have FFA (Frontal Fibrosing Alopecia) which is a form of scarring alopecia.  I suffered from itchy forehead, especially itchy eyebrows, but just shrugged it off as my fringe 'tickling'.  I had been going through an extremely stressful few years (losing both parents within weeks of each other and then my oldest brother, all to cancer and then my youngest brother being diagnosed with it too but surviving the most horrific treatment)...no wonder I just brushed things aside.  A year later I noticed hair loss around my ears and then realised that my hairline had receeded.  Now, three years later I'm 'stable'.  I've lost an inch all around the front hairline.  My hairstyle hides this very well.  If I didn't tell you about it, you would have no idea.  My close family and friends know and I do sometimes drop it into a conversation when speaking to those not 'in the know' and I always feel quite smug that they have no idea. :)  

I'm a lot older than you...I was 50 when I was diagnosed.  I was heartbroken at first.  I've always had a love/hate relationship with my hair but for the past 10 years I've loved it and people always complimented me on my 'crowning glory'.    

I was very lucky that the Consultant I had was an expert in FFA (although she has now left to go to Singapore so goodness knows who I will see in April when I go back for my three monthly check up). She prescribed steroid injections into my scalp, Hydroxychloroquine tablets, Scalp steroid application, and Regaine 5%.  My condition has now stabilised and I'm hoping that it doesn't flare up again as, if it stays like this, then I'll be content.

In your favour is the fact that you have caught it very quickly. Hopefully you will be given treatment that will help slow the condition down so that it burns itself out without causing too much hairloss.  I saw a Tricologist, privately, within a few days of first noticing my hair loss as I couldn't sleep so couldn't wait for a hospital appointment which was a few weeks away.  He told me that I'd probably had the condition for a good year and that, as the hairloss was so gradual and started around the temples and forehead, it was only when it reached around my ears that I actually noticed.  When I spoke to my hairdresser after I'd seen him, she admitted that she had noticed it but, as she knew how stressful my life had been for the previous six months, she had just put it down to this.  Now she, and every other hairdresser in the salon, know that if a client mentions itchy forehead/eyebrows, or they notice hairloss, they will point it out to their client.

Have you been prescribed any treatment yet?  The Trichologist I saw sent a letter to my GP recommended that I be put on Hydroxychloroquine and a liquid scalp application as soon as possible.  Fortunately my GP was more than happy to do so and within a couple of days I was on treatment well before the actual biopsy took place which confirmed FFA.  
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CosmicSediment View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CosmicSediment Quote  Post ReplyReply Direct Link To This Post Posted: 19/March/2017 at 1:29pm
Hi guys,

Thank you both very much for your replies. Kayjay I am sorry to hear that you have had a very difficult experience with your diagnosis, I think time is a great leveller of things and as you go on through life you will come to terms in your own way. Please don't let something that is purely cosmetic get you down, your health is not affected and you will be well. This process will be difficult but you will find a way to be strong and you will cope with it, no matter what. Allow yourself to go through this process and feel all the things you need to feel, don't be afraid.

Pavla, it is very reassuring for me to hear that you are able to hide your hair loss purely with styling, it would be nice to imagine this might happen to me as well! The appointment I mentioned in my original post was on Tuesday and on Friday just passed I called the dermatology ward and the lady who answered the phone happened to be the nurse who was in my consultation. She could not have been more lovely, she reassured me that this is a slow condition and it's unlikely that I will notice any significant issue before my biopsy in 5 weeks. Like you, she said to me myou don't understand how glad I am that you happened to mention this, you are so lucky' and I do feel very lucky. I am not sure whether my age is a good thing, or if it will speed the loss up because I am younger, but I will find out I'm sure! I had called the nurse to ask about any topical treatment in the meantime, as it made me feel better to take at least some action before my biopsy, and she said she will speak to the Dr and hopefully issue me a gel on Tuesday that I can use in the meantime. At my appointment they also mentioned hydroxychloroquine which they intend to put me on once the biopsies have confirmed LPP/FFA. My only slight concern is that it might upset my stomach, which tbh isn't great even now. But hopefully they will be able to guide me on that.

Truly, at this point, nearly a week after the initial diagnosis I am quite peaceful. I've done a lot of research on the many different aspects of this condition (from the actual hair loss, to treatment, wigs, hairstyles, baldness) and I can honestly say I am alright. I'm sure there will be times that are challenging but I am certain that I will be able to handle it. Initially I was feeling very sorry for myself as I had such a difficult few years and was very tired at the thought of beginning a new battle, but now I am making peace with it. I don't intend to fight anything. I will take all my doctors advice and do what I can to help myself, but if all of my hair succumbs to this I will accept this outcome. I know everyone is different, but I do feel so relieved that this condition does not affect my general health, and I know I will be fine.

The only question I have is about washing my hair, I have a new attitude towards shampoo obviously and don't want to make anything worse. Can you recommend a mild or appropriate shampoo/conditioner that will be preferable?

Many thanks again to both of you for replying, I appreciate input so much

Kind regards
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Pavla View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Pavla Quote  Post ReplyReply Direct Link To This Post Posted: 21/March/2017 at 8:53pm
CosmicSediment...you definitely seem to be in a good place.  You're right, you will have some down days, I know after three years, that I have the odd 'downer', but they are few and far between now.  I actually feel that with scarring alopecia, you know for definite that your hair will not grow back so I feel that it is easier to accept.  I don't think I could go through the ups and downs of other forms of alopecia when hair sometimes grows back only to lose it again.  With regards to shampoos, conditioners etc.  The Trichologist told me to use Neutrogena T-Gel which helped with the itching.  To be honest, I didn't have a lot of itching on my scalp (I know a few people who have it quite bad).  The smell took me back to my childhood (cold tar shampoo...argghhh Disapprove).  I used that once a week and my usual products the rest of the time.  At first, I started buying expensive products from my hairdresser...ones that were designed for coloured hair and very gentle etc.  I wasn't keen on them but kept going for a few months.  Then my Consultant told me not to waste my money as any shampoo etc would not make my hair any worse.  I get my roots dyed blonde every six weeks and she gave me the go ahead to keep doing that too.  I wish you all the best and truly hope that your treatment has the same positive outcome as mine has.  My Consultant had photographs taken at the start of my treatment and at my last appointment, three months ago (so over two years in between the first and last consultation) she told me that my hairline had virtually remained the same...just a little more loss at my right temple.  I have a full fringe and so I am very self conscious about this particular part of my hair being thinner than it was.  I discovered Aveda Thickening Tonic which you just spray onto newly shampooed damp hair and then blow dry...it is a very, very, good product for giving your hair volume.
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CosmicSediment View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CosmicSediment Quote  Post ReplyReply Direct Link To This Post Posted: 24/March/2017 at 9:35am
Hi Pavla

Thank you for taking the time to reply, it's very kind of you to offer me advice and I appreciate it very much. That's good to know about the shampoo, I did a bit of research and bought some without sulfates, and now I wash my hair in cold water because I felt as if hot water would definitely not help any follicles which may be inflamed! I think if/when I do lose some hair I will probably try to go blonde as a lot of people have recommended as it's harder to notice the thinner areas. I'm very lucky in that my hair has always been very thick and I have a lot of it, so hopefully it will take a bit longer for it to get noticeably thinner.

Do you want to know the funniest part of all of this, four months ago I donated 13 inches of my hair to make wigs!! Unbelievable. What's interesting though is that at the same time I got an undercut at the nape of my neck, mainly to try to take some of the weight out of my hair, and that has grown back absolutely normally. So I think that my hairline at the back must be completely normal, because otherwise I can't see how it would have come back the way it has. In four months it's gone from a #1 shave to shoulder length.

To be honest the worst part so far about all of this has been other people's reactions. When I say I feel fine about it I really mean that, but when I mention it to people (friends or colleagues etc) they give me this really patronising head tilt and say things like 'I'm so sorry!!' And 'you're so brave!!' And I think hold on a second I told you I was fine, I feel as if people are constantly telling me how bad my situation is and trying to convince me that I shouldn't feel fine, that I should be devastated. It's very irritating. And in addition to that there is the implication that my way of dealing with it is somehow better than someone who doesn't want to be open and would rather try to hide it, which I think is extremely unfair. No one way of coping is right or wrong, everyone will find their own way through. I understand that people are just trying to be nice, but I've literally been called 'inspiring' and it's extremely embarrassing. There isn't anything wrong with me, and there certainly isn't anything wrong with women who don't have hair. I wasn't aware of the stigma until now and it's been worse than I thought. I've looked through tags on Instagram of women who have shaved their heads and they genuinely look great, I don't feel scared at all to look like that. I haven't seen a bad photo of a bald woman yet. I think maybe people just have their own insecurities and are projecting them on to me, but why should I be made to feel bad? It's an irritating situation

Thank you again for all your help and advice!
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