Comment

Comment by Minter on May 5, 2018 at 8:19am

Hi @ PBsunshine!, I am glad you found us! But I am sorry for the reason why :-(   

Comment by Wyobalance on May 4, 2018 at 10:56pm

Pascal, you are right on.  Whoever came up with the terminology was stupid.  It should be described by location.  All are LPP. 

So, LPP-Frontal  &  LPP-Diffuse would be more appropriate.

Comment by Pascal on May 4, 2018 at 2:04pm

@Jules Australia and others please help me understand; if I understood you correctly some patients can have only FFA, and some have LPP FFA? Isn't FFA one possible variant of LPP, implying that anyone who has FFA has also LPP?

Comment by PBsunshine1 on May 4, 2018 at 11:23am

Happy Friday :) and thank you all until I found this online site I felt all alone in the world. I am single and appreciate that there are others who understand this issue, and can even help me smile. Anyone know a single bearded man??? LOL

Hugs

 

Comment by Minter on May 4, 2018 at 8:20am

@Jules Australia, looks like you already are set with a bearded one! I also want to thank you for taking the time to write your post, same as @Plf says it really does echo how most of us, well me for sure- feel about this stupid FFA. 

PS.... @Jules -  wine and crackers with a red and orange sunset in Australia, it all just sounds so very lovely :-) 

Comment by Plf on May 4, 2018 at 3:52am

Thanks Jules for all your homework and heartfelt post...you certainly capture how we all feel, 

Comment by Jules Australia on May 4, 2018 at 3:50am

Minter, I loved your reply to halfbakedwho about finding a ZZTop member or similar.....    halfbakedwho, my husband loved your imaginative camoflauging ideas/queries ..... now you have me thinking as he has a beard, maybe I could put him to use on that front.....hmmmm.. have to at least give it some thought.....Friday evening here in Qld/Australia...'.red wine & blue cheese on crackers time, watching the red/orange sunset'...cheers for now    

Comment by Jules Australia on May 4, 2018 at 3:26am

I agree with Annie May & others ... the psychological impact seems to be a common & significant burden many of us carry living with the symptons of lpp/ffa. It should be recognised and taken more seriously by medical practitioners. It seems that so many of us, including myself have had to resort to anti-anxiety/depressants, directly related to the negative effects this disorder has on our psychie and general quality of life...the fact that it is chronic, the relentless progression of loss, degradation of hair quality & skin issues...the continual tiresome adjustments we have to make dealing with camoflauging the bizaar progressive aesthetic changes or just trying to look normal...Not to mention those of us who also experience terrible scalp discomfort/sensations, which can be quite haunting & a continual reminder that the disease is active, still lingering (with little or no effective relief)........seems never-ending!

I found these articles/abstracts describing the psychological impact &  quality of life effects on patients with cicatricial (scarring) alopecia which might be of interest :-        ncbi.nlm.nih.gov/pmc/articles/PMC3276897/    (Psychological Impact of Cicatricial Alopecias)   ncbi.nlm.nih.gov/pubmed/25597233/  (Quality of Life & Psychological Impact of Scarring & non-scarring alopecia in women)   Also another article  "Lichen Planopilaris Update on diagnosis & treatment" describes quote " This condition can have major psychological consequences for affected patients; therapeutic management often is quite challenging, as relapses are common after local or systemic treatments; Further research needed on pathogenesis, & randomized controlled trials of treatment with scientific evaluation of results necessary to appreciate the proposed treatment"......."symptons have high morbidity & distress in patients"   from:-   ncbi.nlm.nih.gov/pubmed/19341936   I also found another article headed "Clinical Description of Frontal Fibrosing Alopecia with Concomitant Lichen Planopilars" www.karger.com/article/fulltext/479799   This describes that some patients who seem to have both ffa & lpp elsewhere on scalp could have a higher susceptibility to producing intense lichenoid reactions than patients with isolated FFA or LPP. An intense inflammatory reaction could worsen the symptons in these patients, & this might explain the higher percentage of patients with pruritus(itchiness) & pain found in the study. Sorry, hope its not an overload of info, but, at least for myself, the only way I can try & make sense of all of this (& I haven't got there yet), is to research, because, funnily enough, I'm not going to find the answers from Doctor Visits. Anyway, hopefully some here might find the info interesting. thx for listening  xx

Comment by Plf on May 3, 2018 at 6:12am

Well no brave plf, cancelled due appointment and the rang today to keep..

Last option..to medicate or not too..

Comment by Halfbakedwho on May 3, 2018 at 6:08am

I am too encouraged here with the dumb jokes, but I appreciate being one of the forum comédiennes. 

SadinChicago, I hear you, and what you describe as well as BubbaLu seems to be getting closer for me. My hair, to me, looks strange. The top is thick and balding - at the same time...! I am trying to stick my thicker curls on top of the receding hairline which means pulling my hair forward, but you can see where the hairline starts too far back underneath. To me, I look a bit like a frog (which maybe goes with where I live). A frog b/c it kind of makes me have a long flat forehead look with my hair pulled out in front - a bit like Kermit. 

So I'm feeling resigned, kind of angry, kind of (still) incredulous that this is happening at all though it's been a year since my diagnosis. 

So, the idea is to get a "camouflage man" who is camouflage AND a bodyguard sort of thing. A big guy with a beard, who stands behind you all the time (or you can sit on his lap as needed).  You adjust his beard on your head, maybe with some barrettes. You feel also quite safe and comforted, and he should be clean and smell nice. You no longer have to fear the dark corners or bad neighborhoods. I may be on to something, n'est-ce-pas? 

• ‹ Previous
• 1
• …
• 74
• 75
• 76
• 77
• 78
• …
• 507
• Next ›
• Page