Frontal Fibrosing Alopecia

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Frontal Fibrosing Alopecia

This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.

Location: Dubai UAE
Members: 545
Latest Activity: 3 hours ago

Discussion Forum

Question on wig customisation

Started by Deborahhartshorn. Last reply by Anonymous Feb 7. 6 Replies

LadiesAs traditional hair toppers don’t include sideburns cover, have any of you customised a wig and turned it into a topper keeping the sideburns?If have how successful was it and what type of wig cap construction did you use?All ideas and…Continue

Possible causes?

Started by Lara79. Last reply by Nora1986 Feb 5. 57 Replies

Hi AllI'm Lara, 38 years old and I was diagnosed with FFA in September this year after noticing what appeared to be male pattern baldness starting around 8 months ago.My GP got the diagnosis wrong which led to a short delay in diagnosis but reading…Continue

Integrated Hair Systems in Toronto?

Started by DW. Last reply by DW Jan 30. 2 Replies

Having recently looked into the Lucinda Ellery method of hair replacement, I am looking for something similar in Toronto. As there are only 3 locations currently for Lucinda Ellery – the UK, New York and Los Angeles, it’s pretty financially daunting…Continue

Thinking of giving up treatments and going to a full wig

Started by LeeKath. Last reply by Jan Jan 27. 27 Replies

Hi everyoneI was diagnosed with FFA just over a year ago.  I have lost a lot of hair mostly on the temples and the front.  I have also experienced serious thining all over my scalp resulting in all my hair taking on an awful 'fluffy' texture as well…Continue

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Comment by AnnieMay 3 hours ago

Hello ladies. A bright spot on a Sunday. I had my eyebrows micro bladed the first time almost two years ago and they had faded to almost nothing. We all know how exhausting it is to deal with our hair issues but dealing with almost no eyebrows was even more discouraging. 

10 days ago I had them microbladed again. The healing process isn't fun BUT I feel like I have my face back again. They're not perfect but I feel like I have a good starting point in the morning which is huge. I would strongly encourage anyone who's lost their eyebrows to consider it!

I've also been using the ananda hemp salve and the scent is strong but I'm finding it gives me some relief from the awful itching I have especially in areas where I've lost hair like the back of my neck. I've been trying the hemp oil on my scalp and it's helping as well. 

I'm working on managing my stress levels. I know that when I'm dealing with more stressful situations the itching is worse.

All of this has come from all of you on this site. Thank you!!!

Comment by Afraid on Thursday

Happy Valentine’s Day!

HBW I agree I love your hair! I also completely understand your perspective, as does everyone else on this site, because it’s completely relative to how much hair you had previously and what the future holds.  It’s the complete unknown.  We all fear the worst and hope for the best. NOBODY understands unless they have the condition.  

Kandy15 thanks for your posts you are such a welcome addition to this group. My reading connected to acupuncture and alopecia seems to state it can help re alopecia areata but not LPP/FFA... however, this is my latest ‘hope’ and Ive had 3 sessions to date with a pretty amazing acupuncturist who came highly recommended and whilst he’s not promising anything I am learning so very much from him (he lectures and trains in other countries too!!) I am new(ish) to the concept of eastern medicine and it seems to make so much sense.  I also like the belief that we can self heal too.  Heavens above though, don’t you just feel so exhausted with this whole thing?!?!  We MUST stay positive, calm and stress free as much as we can.........but it’s soooooo hard!

big hugs to you all xx

Comment by Kandy15 on Thursday

Happy Valentines Day!

I was wondering if anyone who has tried acupuncture for this stupid FAA has had any success as far as stopping the progression of it. I have seen posts where it has been tried by some but I can't find any results.  I ask because a very sweet friend of mine went yesterday to have acupuncture to get some relief for her back pain.  She asked the acupuncturist if it would help alopecia and the lady told her that she had other clients that have alopecia and their hair has grown back all curly.  I explained to my friend - again - that I have a scarring alopecia and it might not work for me.  She confessed that she didn't know that there were  different types of alopecia and was excited that she may have found a cure for me.    Anyway, I just wanted to ask that question of the ladies on this site because we are obviously the "experts" with having to deal with this.  I think we know more then even the dermatologists.

Comment by 2Dachshunds on Thursday

Halfbakedwho: I agree with everyone!  Your hair does look fabulous!  Maybe this is a reminder to all of us (me) to let go of my obsession of looking at other people's hairlines and just live.

I know it is easier said than done and I want to enjoy life more instead of worry, worry, worrying about my disappearing hair. 

Happy Valentine's Day everyone:  Big Hugs to you all!!!

Comment by Minter on Thursday

Wow Halfbakedwho, your hair does look fabulous! But, saying that I know what you mean- to everyone else whose head it is not on- it looks fine, but when it is your hair you just know.  Anyway- 

Happy (Belated) Birthday!!!!

Comment by Halfbakedwho on Thursday

Thank you my friends. It’s not easy hair, but it seems that unless you’re my sister (who got the good hair) then complaining about hair is just a sort of female rite of passage, whether you have it on your head or not...

Comment by Plf on Thursday

Oops celebrate

Comment by Plf on Thursday

I agree, we all have this angst, I know you know that your hairline is disappearing, but halfbakedwho, your hair is amazing, I cannot tell it's receding, ..celeb cele your curls

Comment by KarenD on Thursday

Halfbakedwho,

You look wonderful I think!  As much as I study everybody's hairline that walks past me these days, I would not give your hairline a second glance as I think it looks great!  Your wonderful curly hair gives you a great boost and I think you should just rock the look you have for now!

Comment by Kandy15 on Wednesday

Halfbakedwho,

You have beautiful curly hair and I don't think anyone looking at you could detect that you have a hair loss problem.  I know that we will never have our hair from when we were younger and oh so carefree but your hair looks great!

 

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