Comment

Comment by SandyA on September 13, 2015 at 5:56pm

I just read the Vogue article that is related to the video Mel posted and there is a video interviewing 9 women who've experienced hair loss. It is so inspirational! I love the positive message all these women bring. 

I especially loved the story one of the women with alopecia told when she was sitting with her friends and took off her wig. Her male friend then replied "OMG you are beautiful and you should never put on a wig again." That made me tear right up. 

http://dp8hsntg6do36.cloudfront.net/556671fd61646d490a040000/d5e98f...

Comment by SandyA on September 13, 2015 at 5:23pm

Mel, my interpretation of the results from the article was that the progression of alopecia in the rats with the Vitamin A metabolism malfunction was halted or reduced when their Vitamin A exposure (either via consumption or atopically) was reduced. Likewise increasing the dosage of Vitamin A caused the alopecia to worsen in those same type of rats. However, if memory serves correctly, the article also stated that eliminating Vitamin A all together caused an adverse effect so it was a sufficient balance of Vitamin A that was necessary (although thru this study the researchers were unable to give any recommended levels). This is what I gleaned from the article on initial read and can't say with 100% certainty that this interpretation is accurate.

I was taken aback after reading this b/c I have always loved vegetables high in Vit A like carrots, spinach and sweet potatoes and ate them frequently so was probably getting more than the recommended levels. In addition, I was using a retinol cream nightly and was taking a multi-vitamin that had mega-doses of the most common vitamins. Fortunately, I had stopped taking the drugstore multi-vitamin a few months ago after reading about the adverse effects of mega-dosing (not related to my FFA).

Since reading the article, I have stopped regular usage of any multi-vitamin, the retinol cream, and reduced, but not eliminated, my intake of veggies with higher Vitamin A.

AS FOR THE LACQUER -- I have been using ELF Lock and Seal (purchased at Walmart) on my eyebrows for over a year when I want them to be immovable. It's meant for eyeshadows and such so sounds a bit safer for the skin than a nail lacquer.

Comment by Jen on September 13, 2015 at 3:51pm

Mel,

I just played the video directly from youtube. It was great. I was trying to figure out the lacquer. I am not sure if it's the type used for nails. Nail lacquer is shiny so she is probably using something else.

Comment by Jen on September 13, 2015 at 3:33pm

Hi Mel.

The video would not play.  Thanks.

Comment by Mel on September 13, 2015 at 2:55pm

Jen,
Did you watch the video? I use that exact eyeshadow she uses as a base. It's in my gym locker so I can't recall the brand. But she talks about using a clear "lacquer" on top so it doesn't rub off. I'm not sure what that was. The video tutorial hat's with the article was pretty good.

Comment by Jen on September 13, 2015 at 12:39pm

Mel,

Thank you for that article.  I wish I could find a video tutorial on this subject.  I am wondering what to use under the base so that the base does not rub off.

Comment by Mel on September 13, 2015 at 12:36am

I noticed a story about this woman and Googled images of her to see how she styles her scarves. She lost her hair at 19. Anyway, found this and I thought it was interesting, how she applies her brows...
http://www.vogue.com/13263053/how-to-draw-eyebrows-tutorial-alopeci...

Comment by Mel on September 12, 2015 at 5:20pm

I am also interested in whay the studies say about Vitamin A. I saw your comment, Joy, so I looked back at the links and to be honest, I'm not sure what it saying. Sounds like in some cases you need less, some more?? I recently heard a podcast about skin autoimmune conditions (Sarah Ballantyne), which recommended upping intake of Vitamin A, C, Zinc and Bromaline (pineapple). Recently I saw my hair loss get worse after 4 months on the AIP diet. I wondered if it could be from a recent oral surgery, natural progression of the disease, or because I "cheated," having almond milk, etc. OR, could it be because I consume a LOT of canned oysters and fish now? I had to eat soft foods after the surgery so canned fish was easy. The podcast talks about how these are the foods that help wounds to heal. Vitamin A would be seafood and liver (best forms). She also recommended glutamine. ...Anybody have any clarification about the Vitamin A studies?? Thsnks for any wisdom.

Comment by Classical Anne in NC mountains on September 12, 2015 at 1:13pm

Welcome, Isabel! It sounds as if you're handling this challenge very well. Hope yours remains stable, but you will always find encouragement here if the challenge gets tougher.
Best wishes,
Anne

Comment by Isabel on September 12, 2015 at 12:32pm

Hello everyone. I'm 44 years old and come from Portugal, southern Europe. I was diagnosed 2 years ago - at first I was misdiagnosed with Alopecia Areata, but after changing derms several times, I had an AFF diagnose which was confirmed through biopsy. I'm not menopausal and still have regular periods, like I always had.

I'm currently not doing any medication but took plaquenil for about a year. I didn't have any of the side-effects (I took several blood tests and eye exams during that year) except for some nausea during the first month.

Like many here, I think doctors aren't too open to hearing what we find in our researches online and this has caused me some frustration. I had an uncle which has since passed away and who I'm sure had AFF, from his balding pattern, but everytime I mention this, doctors don't care - it always feels they're more interested in taking my money than finding a cause and a solution...

I've got curly hair and I think this enables me to still hide my hairloss. My loss was rather fast, for about 6 months but seems to be stable now.

Even though it's been 2 years, I have moments of absolute frustration and sadness with this, but some others where I feel hopeful that some breakthrough to our disease will arise.

I try to lead a stress-free life, as I believe stress was the major factor in triggering my FFA in the first place.

I've been a member of the forum for about a year, but my written english isn't good enough so I'm dependant on someone else to write for me, which is why this is my first public post. I hope to contribute more from now on. One thing that I've been noticing in my research is that Spain has a lot of diagnosed FFA cases and some doctors have published a number of studies related to our problem. I also noted that the earliest onset of FFA which has been published to date is in Spain - a 17 year-old young lady.

Thank you all for all the support I feel everytime I read the comment wall and discussions.

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