"Hi, I'm back .... sorry had to help hubby with a job. The thing is that about 8 yeas ago, about 6 months prior to the onset of the severe burning on my scalp, shortly followed by obvious loss (to me) of hair from side burns & front across…"
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Jules Australia
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"Halfbakedwho, I love your sense of humour, don't ever change. You do have a way with words & so often put a smile on my face with your posts. I can relate to the odd feeling of numbness on certain areas of the scalp. I often have a sort of…"
"Oh boy Minter, don't be sorry for venting how you feel, I for one (& I'm sure many others with FFA/Lpp here & elsewhere), have total empathy & understanding of the feelings & thoughts you describe; I get it 100%. I also…"
"Plf, I also have 'bouts' of searching for any missed 'breakthrough' information on the disorder, hoping i'll find something new or positively enlightening. (Wishful thinking I know)... so I get it ... we all need Hope,…"
"Ps: I meant t ask hbw did your biopsy show AGA as well as LPP, & do you feel th minoxidol is helping in any way ?.... my understanding is it has no affect on Lpp/ffa, but may be helpful for AGA"
"Halfbakedwho, I get the gist of what your saying about Dr Donovan. I sift through his site from time to time for info regarding lpp/ffa, however much of it I have already seen from researching Pub Med & other research sites. Some of the info on…"
"Thanks for the tips on relief with Occusoft. Will put that on my list of things to try. & ps Curly K I LOVE your new hair ... does it work the same way as your last style where you keep on, wash & wear for several weeks before…"
"Hi everyone, I haven't commented for a while, but I'm still here, still wit lpp/ffa & it's slow, chronic, ongoing symptons. Has been 7 years now for me since the onset of the pain burning odd scalp feelings & noticeable…"
"Thank you all for baring your soul with exactly what it's like living with this horrid disorder.... it sure is a test to maintaining our sanity, & I relate to every single one of your feelings,; the desparation, frustration,…"
"Minter, I have lost about the same amount as you have from the front, around 4cm {ab. one & half inches, maybe a little more}. I have naturally curly hair which has so far helped, to a degree, cover the loss especially above, in…"
Profile Information
- Relationship Status:
- Married
- About Me:
- I am 56 and have been diagnosed with lichen planopilaris & frontal fibrosing alopecia. I am happily married with two adult children.Was diagnosed July 2013, but extremely distressing symptons of burning tenderness itchiness creepy "crawling" scalp sensations started Oct 2012.For 2 years prior to that I had wierd hair structure/texture changes (althouh I had naturally wavy/curly hair it started growing out kind of kinky esp over top & in front) before the hair recession/thinning & scalp pain began.
- Do you have alopecia?
- Scarring alopecia
- Are you age 18 or older?
- Yes - I am 18 or older
Comment Wall (2 comments)
- At 10:42pm on December 30, 2017,
Rosie from Brisbane said…
Thank you very much for your words of aupport Jules. Where will I find that group you referred to? Is it a Facebook support group? And can you recommend a specialist in or near Brisbane (preferably Southside ) who can assist? I have been to a dermatologist who said he is 95% sure I have FFA and will do a biopsy for confirmation next visit, but will gladly attend a FFA specialist. Cheers.
- At 12:33am on October 27, 2014,
LeslieAnn Butler said…
Hello and welcome, Jules!
How are you today?
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