Replies to This Discussion

Permalink Reply by Dyners on October 2, 2015 at 7:14pm

Great got it sussed! Thanks! :-)

Permalink Reply by Wyobalance on August 12, 2015 at 1:48pm

 CARF International has a list of ongoing studies on FFA (including the one at Duke).  Of course there is always a need for funding which is funneled through CARF, if you would like to donate...much appreciated.  Here is the website:   http://www.carfintl.org/trials-studies.php

Permalink Reply by DragonandFox on August 13, 2015 at 6:42pm

I don't know about anyone else, but, I called the closest study to me on that list at Penn State and got a total run around and after several phone calls someone finally said, "no we are not doing any FFA studies" so, pretty much "stop calling us!

That REEEEEALLLLLY bummed me out and thus, I came up with this idea.

Permalink Reply by lacazette on August 12, 2015 at 2:32pm

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.

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 help eachother, this could be the PERFECT solution. And even if not perfect, It will really slow the process of hairloss

Let's do something , I beg you

ps: sorry for the red color, I don't know why, i don't success to change it.

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! All that makes sense, we need that inhbitor!

Permalink Reply by DragonandFox on August 13, 2015 at 6:45pm

Ok, so I have a bit of ADD and did a speed read of what you listed here but if I understand correctly, there's a correlation with FFA and Vitamin A processing is out bodies AND...."Retinoic Acid" is mentioned here!!! 

That is kind of blowing my mind BECAUSE.... I was GOING to ask my Dr if BY CHANCE using retinoic acid aging creams which help me look younger and remove wrinkles COULD POSSIBLY be the culprit. 

Am I on the right track here??!!!

Permalink Reply by Annie on August 14, 2015 at 1:13pm

D&F, I've also wondered what it was that we're putting on our faces that affects the hair follicles all around our faces.  I kept thinking it was sunscreen or makeup, but I would be willing to bet that there are a lot of us that have used Retin A products for either acne or wrinkles (I've been prescribed Retin A for both.).  Retin A is not cheap, and I'm wondering if this could this be the common thread that ties it all together since it's described as a disease of middle to upper class middle-aged women?  Definitely interesting . . .

Permalink Reply by MJ on August 14, 2015 at 10:13pm

Annie,
Wow. My use of Renova in the few years before diagnosis as well as an occasional chemical peel were on my short list of suspects. Very interesting.

Permalink Reply by lacazette on August 14, 2015 at 2:24pm

I think it will not be dangerous, as it's a topical thing so it don't play with your general vitaminA metabolism, so no real problems,If you don't use too much of course

But regarding hair loss, there's really high chances that the problem comes from this altered vitaminA metabolism/signaling as those researchers explained

In my case and many others in France, it was because of Accutane treatment, but this alteration can come from genetic and others factors. 

That's why this last study who linked directly that alteration with CCCA could be important, and more over this selective ALDH1A1 inhibitor, that could regulate our problem, or at least slow for years the hair loss

There are more than 30 chemical formulations known for inhibit ALDH1A1, but we need help to make this compound become reality somewhere to test it.  that's the problem :/

Permalink Reply by DragonandFox on August 15, 2015 at 10:23pm

actually, Lacazette, the research is saying that topical treatments DO have an effect.

I think that's something for us to explore! And from what I'm reading, I'm now convinced about having FFA because of 7 years using Tretinoin/Retinoid face lotions.

Also, it turns out the material says Vita A can cause Auto immune issues and the lymphatic system is effected.  I am going to get a lymphatic massage as soon as possible too.

 Did I mention my Derm told me he wants me to see someone else because unlike his other clients with FFA, I'm not getting better.

I added a line at the top of the Google/Excel chart about Retinoid/Vita A exposure.  I hope you guys and others will join the doc and fill out that part too, if you already filled out the other lines.

Permalink Reply by lacazette on August 16, 2015 at 6:37am

Hey Dragon, I didn't understand that you were actually using retinoid, you're right it can be a factor especially after 7 years of use!

What is a 'lymphatic massage' that you're talking about please?

yes vitaminA metabolism alteration could be the reason of lymphocytic inflammation, as researchers linked it with CCCA patients

Permalink Reply by DragonandFox on August 16, 2015 at 10:44pm

Lacazette,

The key factor lies within what you wrote about how the article talks about the findings that vitamin A and retinoid products are directly correlated to creating metabolism alteration which they're saying is the reason for lymphocyte inflammation. 

What I am interested to know is, if the Lymphatic system is being affected is there also a correlation to Lymphatic Cancer.  Isn't inflammation the direct cause of Cancer.

Lymphatic Massage descriptions:

http://www.drweil.com/drw/u/ART03409/Lymphatic-Massage-Therapy.html

http://lifespa.com/the-miracle-of-lymph/

I had an Ayurvedic Lymphatic massage way back in 2003. It was incredible! 

Permalink Reply by DragonandFox on August 16, 2015 at 10:51pm

Also, in addition to what I wrote in response to Lacazette, if this research paper is confirming Vita A and retinoid products are directly correlated to changing the metabolic response of Vita A/Retinoid products, why in the world don't people know?!

I'll tell you why, because Big Pharma makes a CRAP load of money on those products!!  really....how many Retinol, retinoid, Accutane, Vita A products are out there claiming they can "cure" acne and aging skin?  Billions of dollars ride on that stuff.

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