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Comment by sadandunsure on August 14, 2015 at 5:38pm

*AGA OR early scarring alopecia....AGA confirmed, not confined.

Comment by sadandunsure on August 14, 2015 at 5:37pm

@lacazette I had a biopsy and it gave me inconclusive diagnoses the "favored diagnoses" was AGA or early scareing alipecia. The AGA is confined by the presence of miniaturization, but the mild inflammation and peri follicular fibrosis can be indicated in both AGA and scareing alopecia. It was taken maybe 3 inches back, near my temple (where I'm losing hair which is also common with AGA) in what would be my side part. I haven't had any clinical sing of FFA - no outward symptoms, no irritation Or itchiness, my eyebrows have never been thick but they are the same as they have been for the past 17 years since I started arching them. I have tons of small white hairs in my hairline, but ther terminal hair around my hairline is broken, brittle, some strands losing color (becoming kind of see thru brown), and when I pull at a strand I can tell it's not as deeply rooted and my hair just 1-2 cm back. That's why I want to know if you guys are have a different texture hair in/on the border of the loss. There are a million things that lead to brittle, hair, and shallow follicle (not getting the right nutrition) is one. I also have low ferritin, but I don't think it would make my only my hairline bad...the rest of my hair is healthy.

Comment by Lo on August 14, 2015 at 4:30pm

Classical Anne - do you mind my asking how much you have lost?  Are you still able to conceal with your own hair - or have you moved on to hair pieces and/or wigs?  And lastly, what is/was your treatment plan?  Many thanks. 

Comment by Classical Anne in NC mountains on August 14, 2015 at 4:01pm

Natalie W -- your post is so beautifully written. Such a thoughtful approach to dealing with the loss, and setting a fine example for your daughter. Your hairloss pattern sounds very much like mine -- I lost my widow's peak and eyebrows first, then the temples began receding faster than the frontal hairline. The result is shiny white skin in all the balding areas. To wear a headband, I have to pull bangs all the way from my crown to my forehead; and as others have said, the bangs are so thin that any little breeze exposes bald areas. The hairbands help hold the bangs in place. My biggest symptom concern is the itchy irritated bumps, which can be exacerbated by the pressure of headbands, hats, or wigs. One thing that has been really helpful for me is a gel headband against the irritated follicles, under a hairband or wig. It's such cool relief. I actually have two, and for a day at the beach, etc. I keep one on ice to switch out for comfort. Here's an example: http://www.amazon.com/gp/product/B00JWTXYSK?psc=1&redirect=true...
If that link doesn't work, try "Cool Grip" Comfort Gel Band for Wigs in an Amazon search, etc. Living in the South, some days are so hot and sticky I use the gel band alone [no wig or hairband] to work in my private garden. Hope this might be a useful idea for some of you.

Comment by lacazette on August 14, 2015 at 2:47pm

Thanks Lorio, I will contact them tomorrow. Two of the doctors in the list are ones of the last presentation  at the 2015 hair congress ( bergfeld and Olsen) that linked vitaminA and CCCA

So they know that inhibiting ALDH1A1 could help to regulate what is going wrong, as their collegue demonstrated in his study. So let's contact them  and the association, we are suffering and there's something that could help, we have to make pressure on them ( even if they are probably already planning some clinical tests I guess, but maybe not!) We need their help to not have to make it by the black market,etc which is complicated.

sorry I make weird sentences, but it's not my native langage;)

@Sad, Yes unfortunately , what you are describing sounds like the process of miniaturisation. The hair grow thinner and thinner and then don't grow anymore

And you can have FFA, CCCA, LLP, in combination of AGA so be careful with dermatos that give diagnostic with a 5 seconds's look on your head.

Comment by Lo on August 14, 2015 at 2:40pm

Sanandunsure:  I actually have soft vellus hairs all over my jawline and "mustache" area.  It is so blonde, you cannot see it... but it is there... and I have no bumps or itchiness associated with it.  I also grow hair on my knees... which is so odd... as it is nowhere else on my legs.  I only have to shave it once every 2-3 weeks... but still???  I do not have small white hairs at my hairline... and the hair there is thinner, for sure... where I believe the FFA is "active".  I am losing at temples and "southward" (around ears) primarily - and have been for 5 years.  The forehead/front just started to recede w/in this past year... and it is back about 1/2 inch - maybe more.  I hope this answers some of your questions.  OH, and I have no eyebrows... I had them tattooed in January and they are awesome... and I have full eye-lashes... in large part thanks to Latisse. 

Comment by sadandunsure on August 14, 2015 at 1:35pm

Also, what is the hair like near your loss? I have broken, dry, brittle hair all long my hairline that doesn't seem to grow, (part of this could be traction wore my hair pulled back for pretty much all of 2014) does your hair look or feel different  in that area? It's like a 1-2 cm band of hair like this, and then the rest is soft and grows normally...it's like i can see an outline of what's going to fall out/thin

Comment by sadandunsure on August 14, 2015 at 1:32pm

So you guys have no small white hairs in your hairline where hair has gone? What about vellus hair/peach fuzz on forehead, sideburns, cheeks? Completely smooth? Do any of you have this with NO clinical symptoms (red bumps, swollen follicles, itchiness, eyebrow loss or body hair loss). Anyone just losing at temples and forehead but not below temples & around ears? I have conflicting diagnoses and with my mom having lost her frontal hairline but not completely smooth, I'm wondering if this is some genetic thing I'm dealing with (was diagnosed with AGA)

Comment by LoriO on August 13, 2015 at 6:31pm

lacazette you should send your information to CARF to add to their research database.  I don't see anything new there since 2012!  (http://www.carfintl.org/research-articles.php)

This page has a list of Drs who are doing research, or at least care about the subject.  Maybe one could help you (us)?  http://www.carfintl.org/trials-studies.php

Comment by lacazette on August 13, 2015 at 6:02pm

 @Sad   Not reverse it cause our alopecia is cicatricial so there's no more follicle when it's bald. but it could the best thing to really slow or even stop the processus. and maybe save the follicles that are begin to be attack

there's already more than 30 known selective ALDH1A1 inhbitors found in studies. Some with their chimical formulations online. We just need a lab that would make our special compound :(

or maybe a professor/hospital who is okay to make a trial for our disease

The relation between altered vitaminA metabolism/signaling and CA, CCCA, FFA is confirmed now, we just need help from a professor/pharma/universtiy,private lab,etc  who accept to make this inhibitor for us and our disease!

Regarding those studies results, inhibit the ALDH1A1 could be our BEST CHANCE to stop or really slow this nightmare!

it will lower the atRA levels in our cranial tissues, it could do all the good thing for our hair: upregulate the wnt pathway, stop the sebaceous gland dysfunction, stop the LPP, so infine stop the process of hairloss

well we have to try this thing before it's too late. But we have to move things on our own cause we are a too small number with some cicatricial alopecia and we don't represent money for the big pharma. But we just need one lab that would make our little pills of that inhibitor, it is possible!

I can't live normally with knowing in my mind that something could slow the processus for years or even stop, and could be reality to help me, and each day that passes, it's some follicles that will never come back, it's so frustrating :/

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