Replies to This Discussion

Permalink Reply by Toby on March 12, 2019 at 9:04pm

Welcome to the group. A dermatologist can tell you if you have FFA. My dermatologist just looked at my heads and diagnosed me without doing a biopsy. If you are not satisfied with the dermatologist that you saw, you could get a second opinion. It is good to clarify the diagnosis and none of us are doctors.

FFA does present with many of the items you mentioned. A receding hair line at the forehead is what I noticed first.  I barely have hair on my arms. I lost probabably 50% of the hair on my legs. My under arm hair is gone. I do still have eyebrows but they have always been very thin. My eye lashes are 50% the length they used to be. The head can itch and there are small red bumps on the scalp at each hair follicle. I did not experience any oozing and have not heard of that as a symptom. Most but not all women are post-menoposal. You really need to see a dermatologist who can diagnose you properly. I had to go to a couple dermatologists myself in order to be accurately diagnosed. Best of luck to you. We all know how you feel.

Permalink Reply by spoilmygurl on March 14, 2019 at 3:40pm

Thank you for the reply. I might have been a little unclear. The oozing was from the hair dye. I’m allergic to the chemical PPD that’s in hair dye. I’ve been trying to find a new dermatologist. I’m in Indiana and so far, the soonest anybody can get me in is early May. 

Permalink Reply by Kandy15 on March 14, 2019 at 2:57pm

I am so sorry that you have been through such a terrible time over the last several months.  I'm glad that you have found this forum. I have found a lot of support and ideas from all of the brave ladies who share their hearts with what they are dealing with.

My hair loss started 3 years ago and presented as a red itchy rash along my hair line.  There was not any oozing or crusting.  My dermatologist did a biopsy by taking a small plug from my scalp and stitching it back up.  The result was lichen planopilaris.  Medication did not seem to help so in about a year I lost the hair from my temples to my ears.  The rash went away and the hair loss stopped for about 2 years,  This past November 2018 I got another rash at my forehead hairline that was red and itchy.  This time I was told it is frontal fibrosing alopecia so I am currently taking medication to try and slow down the progression.  Not sure it's really helping as I have lost about 3/4" of hair but I am willing to do what it takes to try to stop it.  

I have not experienced any of the symptoms that you are dealing with except for thinning eyebrows and very sparse hair on my forearms and legs.  There is a variant of lichen planopilaris called Graham Little syndrome.  Please do some research on it to see if you are experiencing the symptoms that are described.  If so, then mention it to your dermatologist and ask for a biopsy to either confirm it or rule it out.  Sometimes I think we, as sufferers of this stupid disease, are the ones who know more than the trained doctors.  

One other thing.  I have changed all of my lotions, deodorant, face creams, make-up, hair products, etc. to ones that have no chemicals in them.  I have found a website called Be Green that I order from and also have bought from other online stores after researching all of the products on the EWG website.  

Wishing you the best of luck as you are fighting to get some answers.  Please keep us posted.  

Hugs,

Kandy

Permalink Reply by spoilmygurl on March 14, 2019 at 4:00pm

Hugs to you! I googled Graham Little. It doesn’t seem to apply to me. Unfortunately, as my hair was thinning over these past several months, there was no itching, redness, or irritation. So I just figured I was losing it to aging. I didn’t jump on it immediately which might have saved quite a bit of hair had I gotten on medication. Initially there was some frontal thinning, but mostly temples.  Now it’s the entire front hairline and probably a full inch of recession. I didn’t think my body hair loss had anything to do with my hairline recession. The derm appt I went to in Dec 2018 was the 1st time the word “alopecia” had even come across my radar for consideration. As someone with no knowledge of the disease, I thought alopecia meant your whole body is completely absent of hair. I figured since only the scalp of my hairline was affected, it was impossible for it to be alopecia. I didn’t know there were so many forms of alopecia. I wish the derm had done a biopsy. When he said alopecia, i asked would ALL of my hair fall out. He said, “Maybe. And if it does, you have alopecia universalis. But for now, just start using Rogaine and start doing PRP injections”. Everything was maybe and probably with him. In my research, Rogaine & PRP does nothing for FFA. Correct me if I’m wrong. He’s probably not even familiar with FFA. Or dismissed the idea because of my age. 

   I think because I have really bad allergies, my body was just prone to do this. I think the last reaction I had in August set it in motion. It was a perfect storm really. Hormones thrown off when I removed the IUD, thrown for another loop when I started the new pills. Then my immune system went into crisis mode when I had that hair dye incident. If only I could go back in time. It was a complete accident and now I feel so sad about these consequences. I would’ve never used actually dye on my hair because I know I’m allergic. I could just kick myself for being so irresponsible. 

    And everything just happened so quickly. In June 2018 I had a pretty full hairline, eyelashes, eyebrows, and body hair. By December 31,2018. All of that was gone. It’s a hard pill to swallow. I’m holding out hope that maybe the biopsy will reveal it’s not FFA. Maybe my follicles aren’t scarred over. Maybe it’s just  a phase. It’s heartbreaking. And then I feel bad about being upset for something so minor (in the grand scheme of things). People have it way worse than me. And on top of that, why do I have to have ALL of the less common presentations?? Everyone’s eyelashes don’t fall out. Why mine? Everyone doesn’t have their body hair affected. Why mine? Everyone isn’t affected at the nape of their neck. Why mine? It’s supposed to be a “slowly progressing” issue, but my hairline is running towards the middle of my head like a world-class sprinter. Why me?  Ive been wearing hats and wraps out in public because I’m so ashamed. And isn’t that in itself nuts? To be embarrassed about being sick? A situation you have no control over. Thank goodness for the internet providing a place where we can all meet and share this horrible journey. 

Permalink Reply by Kandy15 on March 14, 2019 at 4:56pm

Spoilmygurl,

Have you had a chance to read through the comment section of this site?  When I first found this forum I went all the way back to the beginning of when it was first started and read for days.  I could see myself and my symptoms in so many of the lovely ladies who share this devastating condition.  I am sad and blue most days as well and always ask why me?  Most of us feel this way.  If there was an answer or a magic cure or a glimmer of hope, we would feel so much better.  It's the not knowing what to expect for the future that is the hardest part for me.  We have all tried different medications, lotions, ointments, treatments, etc with success for some but not for others.  It seems that we are all attacked differently by this enemy.  It is truly exhausting dealing with it every day.  It's hard not to feel down, self-conscious and embarrassed.  I think it's very normal to go through a grieving period for what we have lost and continue to lose.

We are all here for one another.  

Permalink Reply by spoilmygurl on March 15, 2019 at 7:57pm

Thank you for the suggestion. I got through about 9 pages and began feeling better. “Grieving” is a spot on description. And you’re right. I deserve to allow myself that grief. It’s just a matter of pressing forward now and taking each day as it comes. Thank you again!

Permalink Reply by tbg63 on March 15, 2019 at 6:56pm

Hi there!!! I've been absent from this board for quite some time as I went on my own little journey.  I came back today just to see what's going on and to share a product I just discovered that is helping me.  by the way, this too will be long as I also talk a lot LOL.

Of course, I'm no doctor, but I do for sure have FFA and everything you described (more or less) is exactly what happened to me.  I too had the blistering, some crusting and it all started with the loss of hair on my legs, then my arms, then my eyebrows.  I don't want to bum you out, but not only do experts not know what causes it, there's no cure.  Once the hair follicle is attacked (hence the blistering around your hairline), it's a really slow process as that strand of hair is strangled out.  You'll notice breakage that keeps getting closer and closer to your scalp and then - poof, it's just gone.  And then the follicle (which I believe also falls out in my experience) scars over, preventing hair from ever growing again.  It can progress slowly or more quickly and no one knows when or if it will burn itself out.  I'm 55 and I think my condition is getting a little better - as in less hairline breakouts and redness - or maybe it's just taking a little break and may progress again.  About 3 years or so ago I elected to shave my head because my hairline has been obliterated;  from my forehead to my temples and around my ears - gone baby gone.  I got tired of trying to hide it.  Plus, where my hair has been lost is extremely sensitive to irritations, too tight of a hat or scarf and even sweat makes it feel like it's burning sometimes.  Also, my head gets heated really easily.  So between the sensitivity and the head sweat, wigs are out entirely for me.  Interestingly, one theory of what causes this is use of sunscreen.  I can tell you that I was never prone to rashes or whatnot before this FFA thing, but now I have trouble with sunscreens because they can cause rashes on my face, like around my eyes, coming down around the sides of my nose to my chin - basically everywhere that collects sweat.  I'm caucasian, so sunscreen is a necessity for me.  I actually just got over a really bad rash on my scalp, back of neck and face from using a sunscreen that apparently didn't agree with me. 

I discovered that I have FFA after a biopsy from my hairline about 6 years or so ago.  I've been to an alopecia specialist in Los Angeles, I've been prescribed steroid lotions for my scalp, etc etc.  I've tried wigs, I've looked into hair transplants (if it's active, however, I would imagine my body would kill off those hairs too - so not worth the effort of money in my opinion), I've had people question why I would shave and not try to fight it.  I say, walk a day in my shoes and you'll understand.  I also have Hashimoto's thyroiditis and have experienced various skin issues from that over the years as well.  My issues all started in my early 40's - now I'm postmenopausal.  Not a lot of people have this type of alopecia and I'd never heard of it either until that biopsy.  Felt devastated.  

Since then, I've done a lot of work on myself - emotionally.  It's got to be tough being younger like you, sorry it found it's way to you.  I finally came to a point of, as you said, accepting this as my new normal.  Since shaving my head, I've never looked back.  Not every day is easy, but I am not my hair, thank goodness.

I think you should get a biopsy just to be sure and then decide how you want to move forward with that knowledge.  Maybe wigs will work for you or maybe wearing other headwear won't bother you like it does me. Circling back to my most recent rash issue, let me first say I haven't had the intense redness and blistering for over a year now.  I still get redness and inflammation, but no blistering.  I also get a flaky crust (super big turn on) on my scalp and it almost never subsides or goes away.  Until now....  When I woke up to severe redness and irritation last Friday, I called my facialist friend and went to see her.  She gave me a calming hydrating treatment and then sent me home with a bunch of products that would help calm things for me.  In the past, nothing I'd ever try would really work.  I might have seen slight improvement but it was always temporary.  Mostly I just spent a lot of wasted money.

One of the products she gave me was a gentle face cleanser that's designed to calm redness and is made from a seaweed compound.  I often wash my scalp in the sink when I'm washing my face, so I decided to apply it there too.  NOTE:  I didn't have any open sores or blisters - just redness, flake and inflammation.  Anyhow, after the 3rd use of this stuff on my scalp I was shocked - ecstatic - to find that all the redness had disappeared along with the flakes!!!!  My scalp hasn't been this clear in like forever.  I've always had some amount of both - now it's all gone.  That's not what the product is intended for for the record.  My face too is all cleared in less than 7 days.  In the past these rashes could stick around for weeks at a time.  

I'll share the name of the product - rest assured I'm not paid by them nor do I sell their stuff - it's only available in salons/spas I believe.  I'm including link to website so you can find it.  Not cheap stuff, but well worth the price in my opinion.  I am enjoying a totally clear scalp for the first time in many years!!!  I'm over the moon about it.

The brand is Repechage and the product I used is called Red-Out Cleanser (they also have a serum).  Here's the link https://www.repechage.com/collections/face-wash-facial-cleansers/pr...

Anyhow, that's my story and wish you the best.  It's a tough pill to swallow for sure, but it's not a death sentence.  Focus on your inner beauty and that's all people will see in the end.   Happy to chat more offline if you're interested.

Hugs, Terry

Permalink Reply by spoilmygurl on March 15, 2019 at 8:36pm

Hello! The whole scabbing and oozing thing was actually a result of the hair dye allergic reaction. It happens every time. But after the allergic reaction cleared up, it seems my immune system had been triggered and the FFA went into turbo mode. That’s my guess anyway. So there was no red flags per se to let me know anything was amiss. I thought it was simply androgenetic alopecia from getting older. Sept- now I’ve had no redness, itching, or any type of inflammation of my scalp.  *knock on wood* I’ve just seen my hairline creeping, creeping, creeping backwards. I do have the flesh colored papules that is a sign of FFA though. 

I definitely want to get a biopsy. If for nothing but my peace of mind. But it will be months before the networks that accept my insurance have doctors available to see me. May was the earliest. So I’m patiently waiting. 

I also used sunscreen. Daily for at least the past 10 years, I’ve used Oil of Olay Complete for sensitive skin. SPF 15. I was trying to guarantee my black wouldn’t crack and look at me now. Lol! On that note, I guess I can explore the weave/wigs path that a lot of Black women travel. I never did   partake too much because I’ve gotten rashes from some weave and braiding hair. I think it’s the color. I just can’t really tolerate some dyes too well. I been allergic to a tank top before. And henna tattoos (the black ones)  rash city. I guess the stuff they put in it to make the Henna black is one of my triggers. And not to toot my own horn, but I used to have really pretty curly hair and enjoyed wearing it naturally. Here’s a couple pics of happier times. The long one is before I cut my hair to the short style in April 2018.  My head is shaved now too. But hidden. It will take some time and courage for me to be as brave as you. But I  have the head shape of a 4 year old little boy so I might never make it. Haha

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Permalink Reply by tbg63 on March 16, 2019 at 12:22pm

Good morning :) Seems you've got a good attitude going.  In my opinion, I don't think it was hair dye or other things CAUSING the rashes - I think they simply triggered what was already going on under the surface. I used to color my hair, but over time, as my hair strands were dying off, color never looked the same again to me and sometimes it would aggravate my condition.  As for the courage to be in public without hair.... I get you!!!  It took me the better part of a year to unveil myself.  I spent more than a year following others on social media who had shaved heads, always thinking "ya, but she's got such a beautiful face.... she can get away with it".  After awhile, between seeing those images on a regular basis and being beyond embarrassed at how I was looking with this condition, I just finally said I'm doing it!!!  When I told my husband, at first, he was worried that would make me feel even MORE depressed.  But, in fact, the outcome was the opposite.  And, I learned, it's all about how you carry yourself.  When I first shaved my head, I was still shy in public and would wear bandanas, hats, wigs..... Any time I wore a bandana combined with probably the insecure vibe I was sending out, people routinely approached me thinking I had cancer.  I'd have strangers literally walk over to me and my family in a restaurant and say things like "you're such a strong woman" or "You'll get through this".... mostly from people I suspect that have been touched by cancer in their own lives somehow.  I usually wouldn't say anything to correct them, as most of these encounters were brief and I didn't feel the need to explain to them.  My kids would shake their heads and say "mom, why don't you tell them you don't have cancer and it's just alopecia?" LOL.  

After some time, I stopped wearing the bandanas and just went for it.  Even after that, for a little bit, I'd still have random people approaching me and I realized then, that my attitude needed to change.  Once I just decided to embrace it and told all my friends and family, it's been great!!  I still get random stuff from strangers now and then, but rarely comments about cancer.  It's still a little awkward and bizarre, tbh, but I'm ok with it - even when some stranger passing me on the street stops to say "you're beautiful" or "I love your hair" or some other thing.  It's all good, don't get me wrong, I'd rather have compliments hurled at me than insults, but it's still just awkward.  As for your head being like that of a little boys.... that's probably just your insecurity talking.  Though you have part of your face covered (?), I can tell you're a beautiful woman.  I bet you'd look striking :). Most days, I forget I even have this issue and feel just fine about myself.  Some days, I don't like the reflection in the mirror, but I make it work.  I find that just OWNING it makes all the difference in how people see you.

Like you, I too once had AWSOME hair if I do say so myself - that made it all the more painful when it started going away.  I've included pics too.  One fairly recent and one old one where I still had great hair.

Hang in there - I'm sure you have so much more going for you than just your hair.  I bet you'd look sexy and confident to the rest of the world.  Hope you stay positive, though, I know, it can be tough at times.

All the best

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Permalink Reply by spoilmygurl on March 16, 2019 at 12:44pm

I love your positivity. The rash WAS  from the hair dye. I literally am allergic to it. Here’s a pic of the aftermath of one such incident. I posted this unedited because I look quite diff when not being at risk of going into anaphylactic shock.  I don’t even have social media so I don’t want my face plastered all over the internet. That’s why I’m covered in the other photos. Personal preference. 

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Permalink Reply by Mishkatty on October 19, 2019 at 8:58am

Hi I’ve just been diagnosed and I lost eyebrows but not eyelashes, arm and leg hair, still have underarm and vagina hair but this is also thinner, front hairline is thinning too. Still waiting for biopsy for a final confirmation but fairly certain it’s true from looking at pictures. Was all a bit of a shock but slowly coming to terms with it. I have felt so much better now that I found the forum and know I’m not alone.