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: 575
Latest Activity: Nov 23

Discussion Forum

Help any medicines that work?

Started by Toby. Last reply by Johny Jons Nov 23. 7 Replies

does anyone think finasteride works? I think a lot of people at the CARF conference were on finasteride , but does it work? I have been on finasteride 4 months and can’t tell if it is helping. My logic tells me that if I cannot tell, chances are it…Continue

Newly Diagnosed with FFA

Started by 2Dachshunds. Last reply by Toby Nov 15. 21 Replies

Hi Everyone, so glad to find you here.  I was officially diagnosed about a month ago with a biopsy, it hurt!  I had gone to derm and asked why my sideburns were disappearing, she said my ponytails were too tight. Not until I got O magazine that had…Continue

Food Allergy Testing question

Started by NorthCarolinaMama. Last reply by Diart Oct 21. 3 Replies

Hello!I was wondering if anyone has been tested for food allergies to determine if a particular food is causing inflammation, which in turn could exacerbate FFA. I had the skin test a couple of years ago at an allergy clinic, and it came back…Continue

Thinking FFA might be my new normal

Started by spoilmygurl. Last reply by Mishkatty Oct 19. 11 Replies

Hello all! This will be long because I talk too much.     Glad to see activity here. A lot of the forums I found are no longer active. I am a 37 year-old black woman. I have sensitivie skin and am prone to contact dermatitis. Baby oil, Nair, and…Continue

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Comment by Anonymous on November 18, 2019 at 9:14pm

Forgot to say I started Finasteraid last Feb. 1/2 pill daily. CBD oil July or August of 2018.

Comment by Anonymous on November 18, 2019 at 9:06pm

I don't post often but I wanted to let Halfbakedwho and anyone else my results with Finasteride. I am most pleased with the nape of my neck. My derm thought it was more dermatitis than FFA, but it had a red inflamed blotchy area, and mostly bare of hair. I convinced her that it wasn't a birthmark. Family members would have told me if it were. Be that as it may, fine hair has grown back. I have a couple more eyebrow hairs. The top and sides are about the same. Lately, though I have noticed more hairs in my comb and brushes, so have added a laser cap/3 times week. Too soon to tell. Besides the Finasteride, I use a topical steroid if red bumps appear. Also, 5% Rogaine once/daily. CBD oil twice daily. I started seeing hair grow back with the CBD oil, would be interested in hearing from Robin and how she is doing. It is a lot to throw at my edges, but baby steps,.I am very self conscious in the toppers and wigs I have worn, and am trying to work with my fine, straight stick hair and FFA. I react to many commercial products, so use products that are as pure as possible. This group has been a wonderful source for me. Thank you all.

Comment by Halfbakedwho on November 17, 2019 at 2:49pm

Hello everyone, it's been a while. CurlyK I love your new hair. I just tried to catch up a bit - Minter I'm sorry that you're going through a hard time. 

I have lost a lot of hair this fall; I find hair everywhere - all over my computer, in our food, on the rugs, and it's coming from right at the top of my head where it's nice and visible. My easy-breezy denial is not feeling so easy-breezy - my forehead is very forehead-y. There is numbness - that telltale end-of-follicle sign- right through to the middle of the top of my head. And there's also a numb spot on my crown. 

On the FB page, and on Instagram, there's a very courageous and tenacious woman who has overhauled her diet which now excludes everything but pumpkin flour and wheatberries. What are wheatberries? Are they the pink cereal that used to be in Franken berry when I was six? Probably not. 

I am not so courageous nor tenacious. 

Has anyone had a serious and visible slowing of their illness thanks to Finasteride? I was thinking of trying it again. I am afraid of side effects, but my GP thinks it might be worth trying again. Otherwise, I'm thinking of heading back to the fake-hair franchise downtown to hear what they might offer me. 

In other news, I no longer use Botox and other injections, so I have had, as we say in French, "un coup de vieux" (looking a lot older quickly) between my hair and my wrinkles and general sagging face. I am tired of spending money on those injections, which none of my friends here use. It's also not really a French thing - women here just let themselves get older naturally - and more or less gracefully. 

So glad you are all here, please take care of yourselves, big hugs to Minter (and all of you). 

Comment by CurlyK on November 16, 2019 at 7:36am

Hello everyone! I have good news! CARF has released the registration link for the April 2020 conference in Nashville TN. I’m honored to be part of the conference planning committee and we are planning so many wonderful things that address all aspects of our disease - the physical and emotional, and lots of practical tips on camouflage techniques and guidance on how and where to find resources. You can learn more and register at www.carfintl.org

This conference is worth the investment in yourself. It’s where I really started to get answers and more importantly start relationships with other women who share a commonality in FFA - relationships which continue to this day. 

Hugs to all of you this morning! 

Comment by illustr8r on October 31, 2019 at 3:03am

Many (((hugs))) to you @Minter. XXOO  

It’s such a awful disease that takes so much little by little that others take for granted. Sure, it’s “only hair” but it’s self esteem, confidence and what makes you. I hate that I had “Brooke Shields” eyebrows back in the day and the trend now is big bold brows. I had that but now mine have to be tattooed on every 2 years and the hair I have in my brows grows in funny directions.

I’m very thankful I have the space to talk to you. :)

Comment by Gai on October 31, 2019 at 2:47am

Hi ladies, I read the comments you all post but rarely post myself. I so understand all the comments, and it is surely a dreadful disease both physically and emotionally. No one else gets it, that is for sure, except other sufferers. My husband just says men go bald what's the problem, I still love you whatever. I know he is a good man but this doesn't cut it with me. I have suggested I am going to buy a wig for when it is too bad, (so far lost 1 1/2 " from front hairline, and very thin sides), and he then thinks I am becoming fixated. ....  not a help.  

I think a wig will be the only answer, but then I am terrified of looking really silly. How do you pick a realistic one, where to go, not many options in rural Australia. It is so good to be able to vent to others who understand totally. Thank you. 

Comment by Minter on October 30, 2019 at 7:51am

Thank you ladies, I will admit I did feel a lot better for the rest of the day!  Like a weight was gone for sure- I've tried to explain this stuff to (female) relatives and friends and they just don't get it :-( but you guys do and sometimes it just has to be all let out!  

Though I remember when I first came here, I was full of bravado, oh what's the big deal, I'll shave my head or wear a wig or whatever! Now the thought of the above fills me with dread.  You all are the best and I am so glad to be able to be here with you all!

Comment by maggie on October 30, 2019 at 7:21am

Hi Minter, You should never fear being alone. I have been reading this group for a few years but never post. You are always so positive informative, and knowledgeable. I don't come to this site for every post but I always do when you comment. Please don't isolate yourself. With your personality you should have many friends, both men and women. Don't sell yourself short. You have lots to offer!

Comment by Jules Australia on October 30, 2019 at 4:31am

Oh boy Minter, don't be sorry for venting how you feel, I for one (& I'm sure many others with FFA/Lpp here & elsewhere), have total empathy & understanding of the feelings & thoughts you describe; I get it 100%. I also sometimes feel like escaping to that fantasy desert Island idea, especially as the loss slowly continues to creep back further & further, I'll come with you. Noone to stare or judge you, whether it be with or without an odd looking hairline, a shaved head,  a scarf, no makeup, not having to 'bend over backwards' to try & look what's considered 'normal' or expected to fit in amongst society, socially etc. The long term, chronic, recalcitrant nature of this disorder can be so bothersome & exhausting, psychologically & emotionally, to live with. I've been feeling more down than usuall these past few weeks, dealing with the hairline moving back further & trying to feel normal, trying to keep up the positivity .... experimenting with scarves to wear as headbands (at home); but just not feeling right or confident wearing it out in public. Have had same thoughts that if it all just fell out in one hit, the decision of whether to shave &get a wig, wear scarves, whatever to disguise the odd loss would no longer be a quandry but a necessary adjustment.  Yep, Minter I truly get your feelings, hugs to you, ..no better place to 'spill your guts', raw emotions than here, where others are walking in the same shoes   xxxxx

Comment by Minter on October 29, 2019 at 8:53am

I'm pretty sure it was the same for me- funny thing that made me start to wonder what the heck was going on was that I was burning my forehead for a couple years off and on with a straightener or curling iron and I was like (along with my hairdresser) why is this happening more and more often and why am I so clumsy!?

Until I finally realized that my arm hair had disappeared and my hairline was actually receding it all made sense as to why it kept happening! My hair now (3 years after diagnosis) is noticeably thinner and my hairline is just over "2 fingers" from where it used to be (probably more like 3 but hey there is the whole denial thing popping up again haha :-/ )    

I've said it before, I sometimes wish I would wake up one morning and it would all have fallen out and then the decision would be made for me.  

Then I would be done with every single morning of trying to get my hair to look "normal",  constantly fiddling with my hair to make sure it looks "normal", avoiding mirrors because that way in my mind, I can pretend my hair still looks "normal", praying that it is not windy or sunny so my shiny scalp and white band of nothingness are on full display, also wanting to cry because I tend to get really sweaty on scalp/face and then I just look like a weird sweaty freak which is one reason why I haven't gone the "helper hair" route because I would just walk around sweating all the time, the other is that not only would I be sweating, I would also be scratching my head like crazy as hats/scarves anything on my head really irritate me. On the other hand if/when I shave my head, which I've decided to do when the time comes, I know I'm way too old to be edgy and hip with a bald head so I will just be a strange middle aged lady with a bald head who looks really weird.

I hate that this is happening to me, I hate that this is happening to all of us here and to all the women not here who haven't found this forum.  

I'm getting a divorce, so soon I will be a single again and because of this disease destroying what little confidence I had and also destroying what little looks I still had going for me, I know I will now be alone for the rest of my life and am planning accordingly.  Because of this disease I will always be the weird looking sweaty (with or without a wig) grandma (maybe someday) or aunt or neighbor or co-worker with the " strange hair thing and the thank god it's not me's whispers behind my back" going on until I die.  I wish I could just fade away to someplace like a deserted island where no one will notice me and I could just have a little house and be alone, it has gotten to the point that I am avoiding old friends and going out and doing stuff as I don't want anyone to see what I am becoming and it is easier just to not see people. I only have one child and they will be off on their own doing their own thing with their own family eventually and my siblings have their own families to worry about so....yeah I see now that it is already starting to happen, I will actually fade away and be that strange lady who lives alone down the block and is the house to avoid on Halloween!

Anyway, sorry about how this spun into a whole poor me thing, but, no one else gets it unless you have FFA like we do and I am so grateful we have this place here to come to and sometimes it just all has to be said to get it all out.

   

 

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