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Comment by Sad in chicago on August 13, 2015 at 5:25pm

Please explain.  Does this stop the FFA or would or could it reverse it?

Comment by April on August 13, 2015 at 4:54pm

Thanks, everyone! Thinking about trying headbands, but wasn't really sure how to wear thrm, so your comments are helpful. KarenGinny you look awesome in your headband! Would never know you had a hair issue.
Also, the research involving vitamin a is interesting, thanks!

Comment by lacazette on August 13, 2015 at 1:17pm

No Lo, the exact molecules are known to inhibit ALDH1A1, but these comes from researchers recent studies, so a pharma lab/ professor could easily make the chemical compounds for us to take but we need to find where and who!!

I just see the drug 'disulfram' for chronic alcolohism, it inhibit the ALDH1A1 BUT it inhibit also other ALDH families, so we need the selective inhibitor of ALDH1A1

"ALDH1A1 is responsible for the synthesis of retinoic acid in the cranial tissues"

That lead to high levels of atRA in our tissues  kill our hair, our sebaceous gland, silenced our wnt pathway and is the responsible of our " cells cytoxicity auto immune reaction "= LPP

Our altered vitaminA metabolism.Signaling is the cause of our problems!! that's come from the best researchers, we have to believe their studies

In my case it's accutane that altered my vitA metabolism, but it can come from multiple factors as I said ( genetic, chemicals, etc)

So inhibit the ALDH1A1 really sound like the best solution for our nightmare and it could work well for years, cause it will regulate what is going wrong in our VitaminA metabolism.

But we need to find a professor, pharma, private lab,etc.. one that want to help us, and just make this chemical compound for our disease.

that's why I come for help, cause the more we are, the more we will find a solution

there's already the chemical formulations of selective ALDH1A1 inhbitors, but how can we make this become a product if no professor/hospital help us?

Comment by KarenGinny - Iowa, US on August 13, 2015 at 12:36pm

Lo - thanks for the compliment! that was one of my better hair days. I've been letting it grow longer hopefully to hide the hair loss. Most of the time this summer I've been pulling it back into a ponytail when it's too hot outside. I do have a lot of thinning on top where my part is and the hair on my right side is thinner than the left. Some days I don't use the headbands and just try to go with my bangs pulled forward and straightened and lots of hairspray. I'm going to my niece's wedding in a month and need to go to my hairstylist for a trim and to help me figure out how to wear it so it looks okay. 

Lacazette - that research looks promising. I do wish doctors would take it more seriously as this condition seems to be becoming more common.

Comment by Lo on August 13, 2015 at 12:27pm

If these inhibitors are already known, are there prescriptions for it? Are there natural remedies that would do the same thing? Are you taking any of these currently?

Comment by lacazette on August 13, 2015 at 12:12pm

Hey Lo!

No it's the contrary! My full highdose of accutane that I take younger was the cause of my altered vitaminA metabolism/signaling ans so my CCCA/LPP!

And those changes via my RA receptors, etc.. lead to high levels of all trans retinoid acid in continous in my scalp, those atRA hihg levels kill the hair via reducing the wnt pathway( the more important for hair), ihnibt the good fonctionnement of sebaceous gland ( that is directly linked to LPP)

those researchers explain how our alterded vitaminA metabolism is linked to CCCA( and so LPP,FFA,PCA)

In my case it's accutane high dose that changed my vitaminA metabolism, but thoses changes can come from multiple factors ( genetic, environment, dietary)

so I really think those researchers found the main cause of our problem!! And the solution is to inhibit ALDH1A1 as they explain. If we inhibit this, we'll have an upregulated Wnt pathway, better sebaceous gland function, and less LPP inflammation!

there is many ALDH1A1 selective inhibitors already known, so we need help to take one of this at good dosage, it's our BEST CHANCE TO SLOW,STOP HAIR LOSS

those researchers are specialists in LPP/CCCA, we have to believe them, and make things more fast, we 're not a lot with this disease so we have to help eachother to test this inhibitor as soon as possible, the more we wait, the more follicles are definitly dead:/

Comment by Lo on August 13, 2015 at 9:36am

lacazette - do you find that the Accutane has been effective at stopping/slowing your hair loss?

Comment by lacazette on August 13, 2015 at 9:30am

I come here to search help, on what we could, who to contact to help us to buy this ihnibitor, I'm in France, and it's rare disease, no one knows anything!

in the first study I post, the researcher say he developpment a better Aldh1A1 inhibitor. Someone need to go see him to ask help

in this other study, they found 30 selective Aldh1A1 inhibitors!

http://www.sciencedirect.com/science/article/pii/S0009279714003263

We need help:( !! This is the best solution we could ever have!!

Those dermato/researchers are all in usa, but I don't speak well English in oral so I can't phone to have a normal discussion, infos etc..

Let's do something , I beg you

and a last thing, RA ihnibit sebaceous gland function and his stemcells, and in another study, they explain how sebaceous glands dysfunction is linked to lichen planopilaris!

Comment by lacazette on August 13, 2015 at 9:30am

i'm sorry i put this here too

Hi everyone!

I'm CCCA sufferer, a variant form of FFA with LPP and lymphocytic inflammation all over the scalp.I come here cause there's something that could REALLY help us!

At the last 'Norht American Hair society scientific meeting' in may 2015, 4 well known researchers presented this study :

"Altered vitaminA metabolism/signaling in CCCA patients"

Liye Suo, Wilma F. Bergfeld, Natasha Mesinkovska, Helen B. Everts. Poster #665

They made the direct link between the two.

Two others studies that link CCCA/ PCA with alteration of vitaminA metabolism/signaling :

https://etd.ohiolink.edu/ap/10?0::NO...D_SUBID:103145

http://www.nature.com/jid/journal/v1...d2012393a.html

Our metabolism and RA receptors don't synthetise normally the VitaminA, and that lead of high levels of all trans retinoic acid in our tissues.

In different studies, they show how all trans retinoic acid inhibit the Wnt pathway ( the most important pathway for hair ! )

 "LPP is postulated to be an immune-mediated disorder characterized by an autoreactive, lymphocytic inflammatory process against an unknown self-antigen. In LPP, follicular antigens may be the target of a cell-mediated cytotoxic immune reaction

In other studies, they show how all trans retinoic acids enhance the citotoxicity!!!

Everything makes sense, in my case I take full high dose treatment of Accutane, that changed my vitaminA metabolism and my RA receptors, but those changes can come from multiple factors.

In the studies, they talk about pharmaceutical Aldh1a1 inhibitor.Inhibit this Aldh1a1 lower the all trans retinoic acid levels in all the tissues!!

Girls we need to do something!! This inhbitor is our best chances to stop hair loss!!! We need to contact every good dermatologist to help us to make this chemical compound for us, or to make clinical trials, or even make our own command group in private lab if no one want to help us!!

But these researchers are some of the best in the world!! Our vitaminA metabolism/signaling is altered, and we need to take this ihnibitor, cause the more we wait, the more dead follicles we have.

Comment by Lo on August 13, 2015 at 9:19am

Karen Ginny - OMG!  You are adorable!  You wouldn't even know you had hair loss!  The remaining hair is SO healthy looking - and the headband absolutely suits you SO well.  I have short hair (like Sad in Chicago), so headbands can be a bit challenging... but I will deal.

Sad in Chicago - I'm curious about a couple of things if you are willing to share! 

1. Were you initially able to pull your bangs from further back on your head?  I joke and call it the "Donald Trump" way... because you are "borrowing" hair from further back. But I, too, have always wore bangs... and as my hairline recedes, I am just having my stylist cut it so that they are using more of the hair that I do have and bringing it forward for "bangs".  It isn't ideal - but it seems to work... did you ever do this? 
2. Also - did you ever look into using tape-in hair pieces as opposed to the clip-in?
3. Oh - and lastly - how long have you had FFA - or how long has it taken you to lose the amount you've lost?  Hope to hear back!

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