Jules Australia
  • Female
  • Ipswich Queensland
  • Australia
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  • Rosie from Brisbane
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Latest Activity

Jules Australia commented on Celia UK's group Frontal Fibrosing Alopecia
"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…"
Jan 26, 2020
Jules Australia commented on Celia UK's group Frontal Fibrosing Alopecia
"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…"
Jan 26, 2020
Jules Australia commented on Celia UK's group Frontal Fibrosing Alopecia
"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…"
Oct 30, 2019
Jules Australia commented on Celia UK's group Frontal Fibrosing Alopecia
"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,…"
Sep 26, 2019
Jules Australia commented on Celia UK's group Frontal Fibrosing Alopecia
"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"
Sep 24, 2019
Jules Australia commented on Celia UK's group Frontal Fibrosing Alopecia
"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…"
Sep 24, 2019
Jules Australia commented on Celia UK's group Frontal Fibrosing Alopecia
"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…"
Sep 22, 2019
Jules Australia commented on Celia UK's group Frontal Fibrosing Alopecia
"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…"
Sep 22, 2019
Jules Australia commented on Celia UK's group Frontal Fibrosing Alopecia
"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,…"
Apr 17, 2019
Jules Australia commented on Celia UK's group Frontal Fibrosing Alopecia
"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…"
Apr 14, 2019

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)

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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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