Thanks Kat and Maddy for sharing that you both were on bio identical hormones when you were diagnosed with FFA.   That's a little discouraging as I am hoping  restoring hormonal levels might help (specifically progesterone) but good to know not to put all my hopes in one basket. 

My FFA started maybe three years ago (age 58) with gradual loss of my eyebrows.  Actually I started losing my eyebrows in my early fifties but use of steroid creams brought them back.   When they started disappearing again three years ago I expected the cream to bring them back again but it didn't.   My derm at that time diagnosed my loss of eyebrows as  "alopecia areata" but I now realize it was the start of FFA (which was diagnosed with a biopsy in July 2014 when I noticed redness around my (now non-existent) widow's peak.  

My scalp loss has been slow and is still hidden fairly well with my bangs and my hair is fairly thick.  Eyelashes not affected as yet.   I was never a "hairy" person but in the past year have lost all the hair on my arms and skin looks strange (like one of those freaky hairless cats).  I realized I haven't had to shave my legs for many years but remember my Mother was like that in later life and she didn't have FFA.  

Probably TMI but I still have underarm and pubic hair, that hasn't changed at all when I don't have a trace of body hair anywhere else.  What is protecting those hair follicles so they remain unaffected?   Which leads me to think there is some hormonal connection. ..but what??   As you all know this is so frustrating!

...also why does "burnout" occur when loss reaches somewhere near the middle of the scalp all-around.  What is it about the hair follicles towards the back of the head that protects them from whatever (DHT?) is destroying the frontal scalp follicles?   Because FFA seems to come to a dead stop when it gets to those follicles.

While we're comparing stories I think it's pertinent to add that I was under extreme emotional stress from about 2005 to 2009 taking care of my Mother in her last years and issues around siblings and money that continued for a nearly two years after her passing.  I've noticed others have commented they had some extreme stress in the years preceding their diagnosis.

Here it is Anne Louise:

http://www.bigmountaindrugs.com/

You have to fax/email them your prescription. I can order 3 bottles for less than $60 and it works great. I was buying Latisse at about $100 per bottle for a year or so before someone suggested this to me! 

Ladies, this has all been very interesting.  I think these discussions have added great understanding to my own journey.  I had the first inkling of a problem in 2006 when I would have been 61.  I had a place on left temple that was very inflamed.  I went to a dermatologist and was told he didn't know what it was but that it might be psoriasis. Since I'd had psoriasis before, I thought he might be right.  He prescribed Protopic.  This treatment cleared up the spot, but I notice my hair came out in that spot as it healed.  It came out in a clump.

I'd noticed several years before that I had no hair on my arms, and I also notice I no longer had to shave my legs.  I was not concerned as I figured aging was the reason for this.

I had been on bio-identical hormones until about 2005 or 2006.  In 2005, I began using Obagi treatments on my face since I had discoloration from the hormones.  The Obagi treatments included Retin A.  I quit using this product in 2006 or so because my skin was so red.

In 2010, I lost my daughter to suicide.  Over the next year, my hair thinned considerably.  My doctor said it was from shock and stress.  In 2011, literally overnight, I lost my eyebrows.  They had thinned somewhat, but not badly.  I woke up one morning and proceeded to put on my make-up and was shocked to see I had no eyebrows.  

In 2011, my hair thinned, but my profile picture was taken in 2011, so you can see I had quite a bit of hair.  

In 2012, I suffered a head injury and was very stressed.  I lost a great deal of hair that year, and my scalp would itch and crawl.  My endocrinologist urged me to get a biopsy because she said my problem was not hormonal.  

Finally, in 2013, I did get a biopsy.  I had LPP and FFA.  I was shocked.  

I no longer can disguise my hair loss without wearing a hair piece.  I have treated with shots and topical ointments.  I have had allergic reactions to all treatments and broken out in rashes.  I no longer am treating my condition.  I am trying to learn to accept it and move on.  It has been a difficult journey.  I am grateful for all of you.

Those who lose their eyebrows have a less severe case?  Very interesting, but I think it is subjective.  What is less, what is severe?  I did have some itching in the beginning and little red nodule bumps, stress at my job, and in my 60's post menopausal, but they are all gone now.  however, if you pull back my hair from front and around my ears, it is astounding to me how much is gone. I don't even know when I lost it, to be honest.  It just gets further and further back.   I think, at the end of the day, the focus needs to be on how to live with it without freaking out (and to be fair, who didn't or wouldn't?) and move on.  Severe, less severe, able to cover with your own hair (careful the wind!) or use toppettes, wigs, or whatever works, it is all in the approach and perspective.  To say everyone hates this is an understatement; but what choice do you have except to deal with it and get someone professional to help you feel and look your best.  

Sad...I agree with finnding a way to live with it. Chris has a badass haircut, it looks cool. Myself, I'm no where near needing a wig yet, but the women in my family suffer from hair thinning and end up in wigs, so I've purchased a few and plan to integrate them now while people may think I'm just doing it for fun, so if/when the day comes that I'm doing it out of necessity, it won't be much of a "shock". I guess my biggest issue is just the feeling of being inadequate or ugly when it comes off.

Sad and Unsure: I am with you on both your comments. The research on transplants does not appear to be optimistic and yes, when I am "dressed" and wearing my piece I am OK, depending on how it looks that day, but without it I am a mess, physically and mentally.  I am embrassed for my husband, god forbid any of my children or grandchildren face time me before I am ready and the summer with the pool, persperation and outdoor activities is ruined.  But again, I am fortunate to afford the toppers and wear a real hair one for everyday that I style, dye and take ridiculous care of (follea, very good quality) and a synthetic that has the same cut so hopefully one thinks I am wearing my normal hair for exercise, etc.  It washes so much easier. The whole thing sucks.  If I were younger and prettier I would just shave my head and go for it.  All this messing around is exhausting. However, I was trying to be optimistic in my previous post so I will work hard to get back there!  Take care everybody.  I think I will leave this alone for a while and just try to do my "thing" and be what I hope is fairly normal and a productive part of the world.  Like I keep saying, "nobody got sick, nobody died".  In the scheme of things our suffering is slight if you think about all the other stuff that so many people have to deal with. 

thanks for the links with opinions about transplants and FFA Sadandunsure, very interesting!

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.

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.

Hi Mel.

The video would not play.  Thanks.

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.

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.

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...

I use 'Eye Power' semi permanent eyebrow make up. It stays on the whole day and comes with 3 templates. I love it. It's really helped my confidence and I've had lovely comments about how good my eyebrows look from people who don't know I have alopecia.

 Pam or jules from the uk.

I have tried contacting Rob Davidson Lamb about hairpieces but have had no reply, I know you have both had pieces made, can you tell me how to contact him. My daughter thinks he is now in New York. If this is the case can you recommend anyone else?

Hope you can help.

Hello everyone!  I am new to this forum although I have read everything on here since being diagnosed with FFA on September 1st.  I began my "hair saga" in the Spring when I first noticed that something was definitely going on with my hair.  I went to my family doctor and then to 3 dermatologists before finally getting a biopsy and a clear diagnosis.  At first I felt pretty alone and devastated but I have found encouragement from many of the comments I have read here over the past several weeks.

Lacazette, thanks for the information you shared about a potential link to Vitamin A.  I am shocked to see how much Vitamin A I have been putting in and ON my body!  I have discovered that Vitamin A goes by many different names.  The WebMD website lists these other names: 3-Dehydroretinol, 3-Déhydrorétinol, Acétate de Rétinol, Antixerophthalmic Vitamin, Axerophtholum, Dehydroretinol, Déhydrorétinol, Fat-Soluble Vitamin, Oleovitamin A, Palmitate de Rétinol, Retinoids, Rétinoïdes, Retinol, Rétinol, Retinol Acetate, Retinol Palmitate, Retinyl Acetate, Rétinyl Acétate, Retinyl Palmitate, Rétinyl Palmitate, Vitamin A Acetate, Vitamin A Palmitate, Vitamin A1, Vitamin A2, Vitamina A, Vitamine A, Vitamine A1, Vitamine A2, Vitamine Liposoluble, Vitaminum A.

Using this list, I discovered Vitamin A was in my anti-aging night cream (Mary Kay), my shampoo, conditioner, mousse -- even my hairspray (all products from the Surface Awaken product line that I was purchasing from the hair salon).  I have stopped using all of these products.

I was also taking a multi-vitamin with a lot of Vitamin A, and eating a lot of foods with Vitamin A.  My morning oatmeal is fortified with Vitamin A, Most days my lunch is a Nutri-bullet smoothie with baby spinach (lots of Vitamin A!) and fruit.  I drink almond milk (also fortified with Vitamin A).  I have stopped the multi-vitamin and I'm paying attention to everything I am eating.  (We definitely need some Vitamin A!)

I have discovered in my research over the past two weeks that Vitamin A from plant sources (such as sweet potatoes and spinach) is in the form of a carotenoid (such as beta-carotene) and is NOT toxic because the body only converts it to Vitamin A if it needs it. However, Vitamin A from animal sources (eggs, meats, fish, fortified milk, fortified anything, usually) is known as pre-formed vitamin A, and is fat-soluble, meaning that whatever is not used is stored up in bodies.  Too much and we are literally poisoning ourselves!

I live in North Carolina about an hour away from Duke University where there is a study being conducted on FFA.  I am trying to get into the study and will let you know if I am successful in doing that.

Sorry to be so long with my first post, but I just wanted to share with you all what I've learned, and also to say thank you for how you all seem to care for each other on this site.  I don't feel so alone now!

Let's Solve This, I also appreciate the list of Vitamin A sources.  I knew it was used in a lot of products we use on our face, but never thought about hair products.  My first thought when I read that FFA mostly affects middle to upper income women was about the expensive salon hair products (my #1 splurge) I've used for more than 25 years.  Of course, lots of women use the same hair products.  There has to be some sort of perfect storm that causes our bodies to react in such a dreadful way.

Mel, Kat, Pam W, and Annie:  Thanks for your responses! 

Mel, I agree - it would be so great if we knew the optimal level of Vitamin A that we should be getting.  Here's a link to a U.S. Government website that has a lot of information about Vitamin A: https://ods.od.nih.gov/factsheets/VitaminA-Consumer.  It sets the "upper limit" for "pre-formed" vitamin A at 10,000 IUs.  "Pre-formed" Vitamin A comes from animal sources - meat, eggs, fish, milk and this is the same stuff that they use to fortify other foods such as cereals.  This "upper limit" is apparently a lot more than we actually need, though, and not the goal we should set for our daily intake.  What they are saying is that if we get any more than that, we are putting our health at risk.  Again, there is no limit for "ProVitamin A" such as betacarotene because that comes from plants or vegetable sources and is only converted to Vitamin A if our body needs it.  It doesn't store up in our bodies like the "pre-formed" Vitamin A.

Kat, you are so right.  It seems that we don't really know if it's Vitamin A or something else that is causing our FFA.  It may be a combination of things, and Vitamin A may or may not be involved.  As Pam W mentioned, it may also be related to our hormones and changes in estrogen levels.  And a lot of people on the forum have mentioned stress, and I have had significant amounts of that in the past year, too.  I feel like we have to just keep pursuing all of the possibilities until we get this figured out!

Annie, I've also spent a ton of money on hair products from the salon over the years.  It's been one of my splurges, too.  I've always been one to take good care of myself -- and now I'm wondering if I've inadvertently created a big problem for myself!  I'm not saying that the hair products I was using for the past year caused the FFA, but I do wonder why they have Vitamin A (retinyl palmitate) in them and if there is any connection!  Anyway, I've stopped using them until I find out for sure.

I was able to finally make contact with the people who are running the FFA study at Duke University.  Yesterday I faxed them the information they requested (the biopsy results and the diagnosis from my dermatologist).  Dr. Olsen will be reviewing it and then they will contact me to schedule an appointment. After that, I will be able to participate in their study.  I'll keep you all posted on that.

Thanks for reading all this...(if you're still there :-))  It helps me to process all this by writing it down, and I hope it will help others, too.

I have never dyed or colored my hair in any way -- well, unless you count the different wigs I've been wearing.  I also have never used the cosmetic products Let's Solve This alludes to which are heavy in Vit A ingredients.  Of course, I'm sure I've ingested plenty of A in my diet, but can't imagine that it was ever enough to cause an autoimmune response.  And, as I've said before, I've been dealing with a large number of other autoimmune diseases and disorders for the past 20 years.  My hair loss and FFA biopsy diagnosis was just 2 years ago.  So I repeat that those A products may have helped to stimulate the FFA, along with hormones, stress, and all the other triggers we've discussed here.  I do not believe any vitamin alone is a single trigger. 

@Will Be Healed, I'm with Classical Anne on this one.  I've only dyed my hair once in my life, and never used all those Vit A cosmetics.  All the articles say that FFA is a variant of LPP.  LPP is the hair form of Lichen Planus.  I have several different skin problems, all related to Lichen Planus.  I also have thyroid disease, and have taken thyroid meds since I was 16.  My doctor says my thyroid disease is also probably autoimmune related. 

That said, out of curiosity, I'm getting my Vitamin A levels checked next week.  I have in the years since first losing my hair, gone on a mostly Paleo diet, in which  I ate a lot of meat and eggs and sweet potatoes.  All good sources of Vitamin A.

It sounds like it may be a combination of things.  As Annie said yesterday - something is creating the perfect storm to cause our bodies to react in this dreadful way.  I hope the studies that are underway will shed some light!  As for me, I have been highlighting my hair for almost 20 years.  The only things I've changed within the past few years -- I started using the skin products with retinol about 3 years ago, last year I started using the hair products that I referred to earlier, and about 2 years ago I changed to a healthier diet so that I could get off cholesterol meds (although it appears that I'll have to go back on them because my body is still making a lot of cholesterol despite all I've done to reduce it.)  I am 63 and went through a normal menopause about 9 years ago.  I have never taken any hormones.  I have always had somewhat sensitive skin so I try to avoid products with fragrance in them, always use sunscreen, etc.  I try to take good care of myself - I maintain a healthy weight, walk 4 to 5 miles a day, practice yoga, etc.  Losing my hair was not part of my plan :-).  So, who knows what is causing FFA - I just want to try to figure it out for all of us - and for other women so that they don't ever have to deal with it! 

Hi all, I just found out this morning that my derm is retiring.  I have my 6-month appointment the end of October, then will have to find another doctor.  I'm in Springfield MO.  If anyone can recommend someone in my area, I would greatly appreciate it.  I'd like to find someone close, but could travel to St Louis or Kansas City or Arkansas for a good doctor.

I don't recall from the Vit A article that the researchers were stating that excessive Vitamin A or that any specific form of Vitamin Atriggered the alopecia. I thought it stated that when rats already with a Vit A metabolism malfunction were exposed to higher amounts of Vitamin A, that their alopecia got worse. To me, it implied that they conclusively found that reducing the Vitamin A exposure controlled the disease more.

I'll have to go back and read it again to see if they gave any clue as to what caused the Vit A metabolism to malfunction to begin with.

I should have said that if I were as young as some of you are, I'm sure I would be more invested in finding a cause.  You do have my sincere sympathy.  But by the time we hit Social Security, many of us have learned to just say "It is what it is".  I do not mean to discourage anyone's search for answers -- I've simply realized there are too many complicated factors for an ordinary Senior Citizen to draw conclusions.

MJ, great summary of clues -- I'm never that bright so early in the a.m.!  I do think some of those factors we have in common might just get the ball rolling.  And because more of us have used more of those products recently than ever before, it may seem that FFA is a new disease.  But I have no doubt it's been around for ages -- it simply wasn't identified and given a specific diagnosis until recently.  A few here have mentioned that their mothers' have apparently had it since well before the 1990s.  And if you study the hairlines at any gathering of Seniors, you find examples everywhere that never sought treatment or diagnosis --  many folks of the "old school" that tended to downplay symptoms that they thought of as natural aging.  And certainly the average age of 'victims' is in the upper digits.  But I think the condition existed much further back in history -- take Queen Elizabeth the First, for example!  Her head was bald and smooth back to a line from behind each ear.  And she probably was not alone, just one of the few faces of that century whose portraits still exist. Who knows how many cases before the age of affordable photography?!  And affordable medical care, for that matter -- generations past simply did not have the access to medical care that recent generations have appreciated.  If you read some of the technical medical treatises on the subject of the modern phenomenon, you'll note that they do not consider it a brand new condition.  It simply never had official diagnostic criteria, or a name, until the 90s.

Of course we may or may not take comfort in seeing it as an age-old condition, though they do say "misery loves company"!  I'm just so sorry to see it becoming more common among younger women, and that truly may be due to any or all of the factors you named this morning.  But, oh no!  Are people really pointing fingers at microwave popcorn?  Please, oh please, do not let them take that away from me!

Mel, thank you for your very informative response.  It is good for all of us that you can speak from the EPA point of view and share your experience.  In fact, it's quite impressive just how intelligent and informed most of the women on this forum are.  When I was first diagnosed, and my successful and busy dermatologist said that she had never encountered it in anyone else, I did take just a little comfort at being special. And  from the various sites that implied this was a very rare and new phenomena -- it was one more affirmation to the fact that my family calls me "one in a million".  In combination with the statistics on several of my other autoimmune issues, it does compute to very near one in a million.  So I guess I still wear that as a sort of purple heart badge.  But the more I read about FFA, the more I had to question the initial theory that it was a disease of white, educated, affluent women.  Realized that that is a description of the simple majority who have actually sought treatment, not the great numbers who did not, or who were misdiagnosed or simply medically dismissed in the past.  I am so sorry if that burst your bubble.  But, there is a certain wisdom in the "misery loves company" theory.  After all, each of us on this forum -- without wishing to spread the misery -- have taken comfort from the numbers of thoughtful and encouraging members we now think of as friends.  

I have just learned that I passed a carrier gene to my precious daughter, and she is now battling some significant issues.  I wanted to call attention to this particular antigen marker, HLA-B27.  A percentage of people, possibly as high as 20% of the general population, carry this gene -- but the majority are SILENT carriers, and do not develop any of its challenges.  Unfortunately, that has not been my case, and now my daughter is affected as well.  It is a genetic predisposition to develop certain autoimmune diseases because of a gene alteration that affects our immune systems.  Diseases include ankylosing spondylitis, Reiter's syndrome, inflammatory bowel disease, interstitial cystitis  and psoriatic arthritis.  It can also be related to connective tissue disorders, such as Reiter's syndrome, uveitis, and alopecia areata.  My daughter is now experiencing ankyloarthritis in her hips and knees, as well as symptoms of Crohn's disease.  She is 38 and the mother of a very active 5-year old.  You can scarcely imagine my hurt and sense of guilt at having passed these miseries on.  I only bring it to this forum for the sake of any others who are dealing with multiple significant autoimmune diseases.  There is currently no means of correcting the carrier gene or preventing its possible outcomes.  But I do believe it helps to recognize and understand it, so that you can seek proper treatment, early on, for any of the diseases which could develop.  But let me say again, it can be simply silent.  The majority of folks who have this antigen marker, HLA-B27, do not actually develop any of these problems.  I should also point out that a very large percentage of healthy women develop thyroid disease at some point -- that is NOT an indication of this gene.  The carrier gene is identified by a specific blood test, usually ordered by a Rheumatologist, though your primary physician should have access to the same criteria.

Oh Anne that is so hard. My biggest fear is that I will have passed this on to my young daughter. I watch her hairline as closely as I watch my own! Sending you a hug across the oceans

Thank you so much, Natalie.  Your curly-headed daughter is adorable!