Frontal Fibrosing Alopecia

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Frontal Fibrosing Alopecia

This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.

Location: Dubai UAE
Members: 486
Latest Activity: 2 hours ago

Discussion Forum

Hair, skin, nails vitamins.

Started by Anonymous. Last reply by Halfbakedwho 2 hours ago. 4 Replies

Started using hair, skin, nails vitamins about a year ago. They seemed to help. Got light growth around my forehead and temples. Growth seems to have stopped, and hair loss worse. Does anyone else use a special vitamin? I use a rogaine on my…Continue

FFA burns itself out - has anybody reached this stage?

Started by smiletome. Last reply by ElizabethRYT 15 hours ago. 25 Replies

Hi,My dermatologist said that this disease will "burn" itself out and my hair will eventually stop falling out.  Has anybody reached this stage?  If so, how long did you have the disease? How much hair did you lose?  I've had it for 10 years now and…Continue

Trying a new approach with CBD oil...

Started by Robin. Last reply by Robin on Friday. 10 Replies

Hello All, I am venturing into new territory. It just dawned on me that a good experiment would be to try a medical grade CBD oil tincture on my hairline and see if it affects the redness. CBD is the nonpsychoactive part of marijuana that is being…Continue

Please reply if you have used sunblock prior to FFA diagnosis. Having an aha moment!

Started by pauliegirl. Last reply by Christi Q. on Tuesday. 39 Replies

Gang,1) I believe that we with FFA have some sort of genetic tendency that is within the autoimmune spectrum.(I was diagnosed 1/2016. I am 50 and when I was 18 started with Raynaud's disease, another autoimmune issue. As well, my autoimmune labs are…Continue

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Comment by Halfbakedwho 10 hours ago

hi everyone

I am in a headband today. I am starting to move towards more acceptance. At least today, at least right now. My hair loss seems to be accelerating, though I admit I have run out of the cortisone this week and haven't been using it, which is probably not helping. I am trying to get used to seeing myself in the headband, my kids say it looks nice (they are very honest kids ; ) ! ).

I notice my hair loss more "all over" - up through the crown it's thinning. It is SO not worth it to me to go crazy over this. I really just want to move on and look for options to hide it. The annoying symptom right now is my glasses are bugging my scalp behind my ears - this started a couple of weeks ago. Does anyone have this? Are my glasses causing more hair loss? Not that I really care that much anymore - it's just going, going, and it's just ridiculous and ... like I said not worth disturbing my hard-fought equilibrium. 

I also have ordered (rather expensive) oils - apparently us curly-heads really should just use oils. Castor oil (apparently the best is Tropical Isle Jamaican Black) Red pepper oil, coconut oil, argan oil... so I will take care of what I've got left. 

I am trying to change on a deeper level (kind of a life-long project lol). Organizing my time, my priorities - my hair looking more or less okay is a priority, but obsessing over its leaving my head (to land in the shower, in my family's food, on the floor, on the pillow) is not. 

My brother-in-law, my husband's brother, died yesterday of advanced cancer at age 56. So, F.. the hair, it's important, but God has made headbands and hair pieces. 

Tomorrow I might be much less okay with all of this, so don't hold me to it  ; )

Comment by illustr8r on Saturday

@Yash Yes, it’s an amino acid and the other one (NAC) is too but is made to be more “bio” friendly. This is all from reading about it. (?!?) NAC is given to kidney patients after procedures involviing dyes that can further injure the kidneys-so my family dr thought it would be okay for me to take. We’ll see.

Comment by Yash on Friday

Hi Illustr8r. Is L-tyrosine a peptides (an amino acid). My husband was taking peptides a a few months ago for his neck and he claimed his hair was growing faster (he's a baldy). I thought about it but when I read the side effects I decided not to try it. If it works its worth it. 

Comment by Yash on Friday

Hi all. It has been a while since I have logged on. Reading all your stories I feel the same. Gone are the headbands, tying my hair up, upon, curling. My hair is looking dull and lifeless again and when I look at myself in the mirror, I cringe. I hate how I look.

Has anyone even dealing with stress atm. Im finding that since I've been dealing with bullies at work my hair seems to be thinning out more but I dont know what to do. Im not at the stage yet to wear a wig but it just looks so aweful

Comment by illustr8r on Friday

OK, I read an article awhile back by Dr. Donovan that he prescribes  L-tyrosine and NAC (N-Acetyl-L-Cysteine) for his FFA patients.

I bought some but I haven’t taken any yet. I need the approval of my nephrologist (family dr. said it would be fine).

Have you heard of these supplements or taken any?

Seems that they boost your immune system, cellular health and “neurotransmitter” function.

Comment by AnnieMay on Thursday

Halfbakedwho, Jess-

My loss is mostly in my temple area and around my ears. The area behind my ears goes down on either side of the back of my neck (white and smooth) making the hairline at the nape of my neck very thin. The nape of my neck has been itchy so I looked and my stomach dropped as I now see a round patch of white shiny scalp.  No more pony tails. I'm confused because I didn't think FFA was patchy hairloss?

I am trying to stay positive but as Afraid said this is all so cruel.  

Comment by Jess on Thursday

Halfbakedwho- I hate the weird baby hairs! Dark, coarse, wiry. I have a couple of them randomly sprouting from otherwise bald spots and a few that have mixed in with the little hair that's left on my temples. I've actually been tempted to pluck them, but feel silly for yanking out hair when I'm trying so hard to hold on to what I have.

Good to hear you had some luck with looking for hairpiece options. I joined the FFA Facebook group and have seen a couple frontal hair pieces that look really good, and it gives me hope. Like yourself, my loss is around my ears and along my temple. If I do eventually need a hair piece, I suspect that I will need something similar to what you're looking for (at least for a while).

Comment by Afraid on Wednesday

Curlyk. Thanks so much for sharing part of your journey towards acceptance x 

Hope everyone having a good day. 

Comment by Halfbakedwho on Wednesday

I would love to go to CARF in Philly. I used to live in Philly - went to high school there. 

I went to yet another hair/wig place yesterday on a whim, and finally found a person (this time for real) who wasn’t baffled and unhelpful. She says I will need what you have, CurlyK... a custom-made hairpiece that will be glued on. She already has one client like me, although that client is 80 something years old (ha!). It’s very damn expensive though - 800€ - or 850-ish dollars, and apparently I will need two of them though I can’t remember why. Wash one, wear the other? 

In any case I am definitely losing hair now in other places - more behind my ears where my glasses now rub, and more at the nape of my neck. I saw my GP yesterday - she keeps insisting that she thinks my hair is growing back. She is WRONG - what she sees is that weird dark baby-hair that comes as a side effect of minoxidil on my temples. I too had thought that was re-growth at first, neophyte that I was. She looked at the nape of my neck and said the scalp there was irritated - was I touching it all the time? Annoying questions - the answer is NO, my scalp is IRRITATED there b/c of FFA. Like Duh. But I like her- she just doesn’t know a thing about this weirdness. I am teaching her. 

Other than that - I will go see Dr Famous Man in Paris next month but part of me is thinking I am going to stop meds, or at least not go all out with meds to save my hair. The skin is thinner where I use the Clobéstal. Minoxidil is strange stuff too (see « baby hairs » mentioned above). I may just start using oils on my scalp and let it go where it will, and then do the hair pieces when the time comes. No injections, no lupus medicines, no I don’t know what else. I would like my liver to last another 40 years, and there are no guarantees that any meds will make my hair stick on my head any better. 

I still take my iron and vitamin D, and apparently need more vitamin C. That is OK with me. 

Bises. 

Comment by CurlyK on Wednesday

Oh, dear friends, I ache right along with you. What an awful thing FFA is. I still have days when I wonder 'why did this happen to me?' as if I intentionally did something to cause it. I still struggle with anger towards my body and how its attacked my hair.

Sad in Chicago - I hope to write my full story soon and post it in the discussion forum but here's some info that will help:

My bonded hair piece is custom fit to my scalp. The base of the piece is like a yarmulke that at the front, comes almost to where my natural hairline should be, then back to the crown. It comes down just a little bit -maybe an inch or two - on the sides. The human hair is hand knotted into the cap.

Underneath the cap along the edge, there are wide pieces of tape which is where my gal Megan puts the glue. She brushes on glue on my scalp where the tape pieces will go. Standing behind me, she lines up the front of the hairpiece at the front and lays it down front to back and pats it down a little. At that point, it's stuck on but good! It is glued all the way around - no taping - but there is no glue used in the big section in the middle. I had really thinned out on the top of my head as well so I just had Megan shave it down a bit - not completely but enough for the hairpiece to lay nice and snug against my scalp.  

Everyone is different when it comes to how often they have to get it taken off and re-glued. I go every five weeks - I could probably go every six. Some go every 3. It depends a lot on how oily you are. Part of my problem is I'm very dry - dry skin, dry eyes - so the glue holds super securely - which is GOOD in this case.

My piece came long - down past my shoulders. Once it's "on" I get the style I want cut into it. This time I left it a little longer since I've lost more of my hair in the back and needed to cover it better.

As far as the itch. It does not itch constantly. But it can itch along the area where it's glued down. Of course, I can't scratch it so I pat it. I'm not sure if I'm going through a flare up but my temples are itching more lately which is not glue related at all. The itch is not so terrible that I can't stand it - and many days I don't even feel it on my head, I've gotten so used to wearing it. For me, it's worth some patting on my head to not be self conscious about my balding scalp! :) As I've said on here before, no one even knows its not my real hair and I get a lot of compliments on it - way more than I ever did with my real hair.

Afraid, I can share with you how I've moved toward acceptance. I think I was grieving my hair loss the 3-4 years before I actually got diagnosed. I went through so much fear, anger, sadness, trying this product and that to hide my ever growing scalp, tears, embarrassment, etc. that by the time I was diagnosed with FFA (and having done research on it), I moved into acceptance. When I had the paper in my hand that said "FFA", I had a great big cry and then decided to look into hair pieces or wigs. There was something about knowing there was not one damn thing I could do to make my hair grow back, it was actually kind of freeing for me. I had no control of what my body was/is doing to my hair. I was tired of fighting and hiding so I decided to take control over what I could, which was getting wearable hair. I wore beautiful scarves for about two months before my first hair piece came in. I decided to "come out" about what I was going through and found it freeing.

Hope all this helps!

P.S. I got an email that CARF is holding a doctor/patient conference June 8-10 in Philadelphia, PA. I'm planning to go - is anyone else?

 

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