Comment

Comment by lacazette on August 24, 2015 at 1:47pm

Hey Rachel , here it's the presentation's title of the 4 researchers/dermato at the hair scientific congress in may 2015:

"Altered vitaminA metabolism/signaling in CCCA patients"

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

We don't have access to the whole thing they presented.

I just found one study from Liye Suo where he explained in details how altered vitA metabolism lead to hairloss and CCCA. And why inhibit aldh1a1 could be a solution:

https://etd.ohiolink.edu/ap/10?0::NO:10:P10_ETD_SUBID:103145

if the link doesn't work, type this in Google :'The mechanism by which dietary vitamin A regulates skin stem cells during hair cycling'

Here it's another study linked vitaminA metabolism and CA,PCA,CCCA,etc: http://www.nature.com/jid/journal/v1...d2012393a.html

And this one is a study showing how inhibiting aldh1a1 would decrease our all trans retinoic acids concentrations in the scalp:

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

Comment by Rachel218 on August 24, 2015 at 10:41am

Is anyone able to send me the research article about the vitamin A metabolism ? For some reason I cannot seem to open the article that was posted.

Comment by lacazette on August 24, 2015 at 9:53am

LSE, I'm too in a big depression because of aggressive hair loss, but keep in mind that there's hope for the future. 3D bioprinted hair follicle and stem cells thérapies are not that far away especially in japan where they can skip phase 3 in regenerative medecine. Do some researchs regarding those subjects you will see that the future looks bright and hopeful.

But for the moment Im like you and it's difficult to live with aggressive hairloss.

Those researchers in may 2015 found a good aldh1A1 inhibitor that could be a solution for our disease. At least slow it down.

You should make your dad watch that recent study regarding altered vitaminA metabolism/signaling, maybe he have the contacts to make this chemical compound become reality somewhere in your country. And if it's the case, he will be my hero too ^^

Comment by Liz on August 24, 2015 at 8:47am

LSE. If you send me your email I would be happy to talk to you xx

Comment by Lo on August 24, 2015 at 7:15am

LSE, you can also contact the CARF organization. When first diagnosed (I've had this since I was 38), I called and they out me in touch with a patient outreach advocate (POV). She called me immediately and calmed my nerves and fears after a 45 mo ute call. She and the other POVs have FFA and know what you are going through to a large degree. Please consider calling today. It could help you more than you ever imagined. Look, I know it's hard - no matter what age... But yes, Being so young makes it a bigger hurdle to jump over. But when you say you have nothing to offer, that couldn't be further from the truth. There are men out there who would love to meet you. And for those who are superficial enough to not want to meet you because of hair... Really... Do you want them? If it comes to it, which it may not, there are gorgeous wigs... And other gorgeous hair enhancement options. The key word there... You have options, Little. You do. Please help yourself by calling CARF and get in contact today with s POV... Or co tact the number that Sallywess offered up. You will get through this... And you will love yourself again. A day at a time.

Comment by LoriO on August 23, 2015 at 11:29pm

LSE please try not to despair.  Maybe your derm hasn't gotten back to you because you don't have FFA, which would be a good thing, maybe a reversible thing.  From what I've read your symptoms are different from mine. My hair loss was very slow.  So slow I didn't notice it until it was too late.  

As far as drugs that will slow it down, I'm taking Plaquenil, and use Clobetesol foam.  But I'm not really sure either one is doing anything.  As far as the "lonely hairs", in my case those are the ones that have never fallen out.  So the loss is in a strip behind them.  They don't resemble new growth or baby hairs at all.

I know it's hard when you're so young.  When something terrible happens, you can't imagine ever feeling differently.  But it will get better. It's better not to fixate on it.   Please try to talk to your Dad, or go to counseling to help you deal with this.

Comment by LittleSadEyes on August 23, 2015 at 10:49pm

He is a psychiatrist ironically enough. I have. He like many others knows little about ffa. He has tried to help with the mental side of things to no avail. I am fairly happy just to die at this stage. I am 22 and barren. I will soon look like an old woman. I have nothing to offer. I will end this eventually. In the mean Time it would be nice to at least slow things down.

Comment by Mike'sDeb on August 23, 2015 at 10:45pm

Do I remember from an earlier post you mentioning your dad is a physician? Have you been able to discuss any of this with him? Please hang in there - we may all deal with this differently but you are not alone.

Comment by LittleSadEyes on August 23, 2015 at 10:36pm

I just want to know how to stop this or at least slow it down?! Any drugs? Please help me!!

Comment by sallylwess on August 23, 2015 at 8:19pm

Little Sad Eyes, I also hope you will pick up the phone and call someone.  I am posting this for you.  It is the suicide prevention hotline.

Hours of Operation: 
Available 24/7

If the service appears offline or busy, please call the Lifeline at 1-800-273 TALK (8255). We are available 24/7.

Please call and talk.  I urge you to do this.  

There is hope and help when we feel the most desperate.  Losing hair is devastating, but you can live well with or without hair.  

Call a loved one.  Call a friend.  Call a help line.  Many care.  Many are there to help.  

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