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Best way to support people with ffa

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Spring2017 View Drop Down
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Joined: 10/May/2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Spring2017 Quote  Post ReplyReply Direct Link To This Post Topic: Best way to support people with ffa
    Posted: 10/May/2017 at 9:04pm
My mum has just had a confirmed diagnosis following a biopsy of ffa, it was suspected prior to confirmation and she is really struggling to cope and I'm finding it distressing how she is feeling about everything. She is noticing more hair loss, she has a hair piece but won't wear it as she thinks it's looks awful, even though I think she needs to give it a chance as it doesn't look bad at all. But she just isn't in the right frame of mind to even consider wearing it out. Everything family say is wrong and that is because it's hard to understand when your not experiencing it, but she can carry on feeling this miserable and I just don't know what to do.i have attended hospital appointments with her, have been with her to get a hair piece, I have tried to encourage her to wear the hair piece with no avail.
It would be great if someone going through ffa could help in terms of anything anyone could do or say to help.
Your help will be massively appreaciated, I just don't know what to do
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Pavla View Drop Down
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Joined: 15/June/2014
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Pavla Quote  Post ReplyReply Direct Link To This Post Posted: 12/May/2017 at 9:56pm
Your Mum is very lucky to have you by her side. I was diagnosed with FFA three years ago.  Can I ask you how old your Mum is?  How advanced is the FFA?  Has she been prescribed treatment (hydroxychloroquine, steroid scalp application, steroid injections etc)?  What kind of hairstyle does she have?  I have lost hair around my ear, up and over to the other ear, about 2-3cm receeding.  Thanks to a fabulous hairdresser, if I didn't tell you I had FFA you would never guess (unless it's a windy day and I start to get a bit paranoid :) ).  My hairstyle is a short bob with full fringe.  My fringe has thinned but with the help of Aveda thickening tonic, which I spray onto my fringe before I blow dry it, again it's not that nocieable to those who are not in the know.  My family, and close friends, all know about my FFA.  Has you Mum got close girlfriends she can talk to?  Sometimes it is easier to talk to friends rather than family members.  My husband and daughter are very, very supportive.  I looked into getting a hair replacement system from Hair Solved, who have a clinic where I live.  However, despite the fact that I thought it was a good system, I felt my hair loss wasn't bad enough go warrant going to the time, not to mention the expense, of it (visiting every six weeks to have it tightened etc).  I've also bought a hairpiece (fringe) and think it looks hideous (from one of those hair extensions shops).  However, there is a Trevor Sorbie salon where I live who are part of his "My New Hair" network - they specialise in supplying and fitting of very good wigs.  I may at some point in the future visit them to see if they can supply my with a fringe, just to give me a bit more confidence when I go on nights out.  They cut and colour the hairpiece to a perfect match to your hair and style.  I have my hair cut and roots touched up every six weeks (I have dyed blonde hair).  I was a bit worried at first about dying my hair but my consultant (who is a leading expert on FFA) assured me that it would do no harm whatsoever. Three years later my hair loss hasn't got any worse, apart from a tiny bit at one temple. It might be worthwhile seeing if he has a salon near where your Mum lives.   Although I do get upset sometimes they are very few and far between now.  I do a lot of exericise and at first I worried that my hairloss would be more apparent during these sessions but I discovered that a hairband worked perfectly and concealing it and gave me the confidence to carry on as I have always done.  

If your Mum has recently been diagnosed then, like me and no doubt like the vast majority of people with hair loss, it takes a while to accept what it happening.  With FFA you know that your hair will never grow back, once it's gone, it's gone.  I actually found that easier to cope with than other forms of alopecia where you lose your hair, go through the relief of it growing back only to hit despair when it falls out again...I couldn't go through that.

I think just keep supporting your Mum the way you have obviously been doing.  Look into Trevor Sorbie salons for a good, professional fitted, hairpiece.  A great hairdresser is a blessing so hopefully your Mum has one too.  Hair products, like Aveda who have a range of hair thickening products, can also help with confidence.  With me, it was all about losing confidence in myself so I was, and still am, extremely grateful to my loved ones for the continuous support and confidence boosting comments that they give me.  

Wishing you, and your Mum, all the best.
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Chrissy70 View Drop Down
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Joined: 23/March/2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Chrissy70 Quote  Post ReplyReply Direct Link To This Post Posted: 14/July/2017 at 8:19pm
Hi i was diagnosed with FFA about a year or so ago. I take hydroxychloroquine and I'm not sure how much it helps. I was 45 when diagnosed but think it's been coming since I was about 40. I struggle some days as have lost hair around my ears and my forehead looks like it never stops! The worst thing I find in having no eyebrows. Makes me look ill and if I have a 'bad eyebrow' day people think I'm either shocked or in a bad mood. Best of luck ladies X
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