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: 551
Latest Activity: on Saturday

Discussion Forum

FFA Returned

Started by Tina S. Last reply by HeatherG Apr 19. 14 Replies

I was diagnosed with FFA in September of 2016. I was treated with steroid injections in my scalp along with a topical steroid. My hairline continued to recede. In April 2017, I was diagnosed with breast cancer and my dermatologist recommended…Continue

Joining FFA Clinical Research Study

Started by ammie. Last reply by HeatherG Apr 19. 25 Replies

Yesterday, I had my first appointment with Dr. Olsen at Duke University. My biopsy came back as LPP and she confirmed FFA during the visit. They took photos, measured the hair loss and I was entered in the voluntary clinical research study. For the…Continue

Newly diagnosed in Colorado

Started by Kikibob. Last reply by julie Mar 18. 50 Replies

Hello.  I've been reading this discussion board for a week, since I was diagnosed with FFA on Feb. 12th.  I'm 54 years old and lost my eyebrows probably 3 years ago which, at the time, I attributed to a side effect of 5 years on Tomoxifen.  I've…Continue

Autoimmune diet

Started by Lu. Last reply by Toby Mar 18. 4 Replies

Hi all,Just wondering from those who have tried / are following the AI diet, did you notice any difference in symptoms (like burning, itching scalp) & if so, how long before you noticed it? I’ve been gluten /grain & dairy free for 3 weeks…Continue

Comment Wall

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Comment by Bloomingdalekid on Saturday

There is a hairspray called Big sexy Hair.  I get mine at Ulta.... it is super hold....nothing is going to move your hair!  Good luck!  

Comment by Toby on Saturday

Hello ladies, I am hoping you can help me for an upcoming business trip for the once a year pilgrimage to my corporation’s head office. I a  afraid of being in a windy climate in a downtown city where I will need to walk several blocks from the hotel to the all day meetings. I am afraid all my carefully combed hair covering bald spots including bangs will all be wind blown by the time I get to the meeting place. 

When end I was diagnosed with FFA, I switched from general commercial hairspray to hairspray rated as a “1” on the EWG website. Does anyone have a good hairspray that holds. I really appreciate any comments.  My hair is just above my shoulders with bangs and obviously large comb overs.  Please help,

Comment by Minter on Saturday

I will definitely share what I learn about this procedure KarenD,

it is so frustrating and embarrassing and annoying to be standing there blotting my wet forehead while everyone else is cool, calm and collected :-( 

Comment by KarenD on Friday

Minter, let me know what your Derm says!  I haven't approached mine with my questions yet but have had the idea tucked away for when I lose a bit more hair and need a break from the sweating and the sad look it leaves behind.  I like to know I have some options out there to look forward to when things get me down!

Comment by Minter on Friday

Wow, so scalp botox is a really a thing and is really something that would work to limit the uncontrollable random head sweating! Apparently it is done mostly by the spin class diva's who don't want to ruin their blowout with sweat :-/ seriously?!

But I will be giving my dermo a call next week to see if this is something they do in their office - thanks KarenD for mentioning it!

Comment by Minter on April 18, 2019 at 8:58am

Botox for sweating? KarenD, I've heard about it for underarms, but never for the head, that would be awesome if it works not too mention maybe doing double duty to smooth out the forehead!  

I'm hoping it works- I can just be standing and doing nothing in even the mildest of heat and I break out sweating on my forehead and scalp, I HATE IT.  Even with HRT therapy it still happens, though not as bucket dripping as before I started, but still happening.  Everyone else around is cool as a cucumber and I'm the one with stringy hair and shiny forehead from sweat. As nice as warm weather is, I dread it because of my sweating.  

I also want to say thank you to everyone for telling it like it is, how horrible this disease is- we are not alone in this ladies, we have each other! 

Comment by Bloomingdalekid on April 17, 2019 at 8:40pm

Jules, Australia, 

I have had the scalp tenderness and it hurts for days - then I have a bout of hair loss - mostly off the crown now.  I also get the itchy scalp, but that hasn’t happened much lately.  I live in coastal California, so I don’t have the humidity and heat that you all have in Australia.  I was in Australia in October - wish I had known and perhaps we could have met - I was in Sydney for 10 days and Cairns for 4 days.... I think Cairns is in Queensland, right?  I have my bad days too, don’t let my positivity fool you.  When I take my “helper hair” off at night and see the awful state my real hair is in, I just want to cry.  I used to have thick, full hair - and it started to disappear in 2003.  My hairdresser told me at that time that I was losing my hair and should get it checked out... of course I didn’t think anything about it.  Fast forward to 2007 - and my forehead started getting higher.  My eyebrows are almost totally gone and I have no hair on my arms.  My forehead has receded about 2 inches but I still have my sideburns (sort of).  I don’t have the facial breakout that so many talk about.  I do have the scaly look around hair follicles on my head - so I suspect I am going to go through a shedding phase soon.  I wash my hair in the shower and have a “catcher” in the drain so I can see how much hair I lose every time I was my hair and it is very scary to me - but I tell myself there’s nothing I can do about it so I try not to fret, and put my “helper hair” on when I go out.  I avoid mirrors when I am inside my house.... So, yes, I have anxiety about my appearance too.  I had my bonded hairpiece changed to “clips” so I can clip it on the crown of my head and then I tape the front to my forehead.  With the lace front I can style it about anyway that I want, including pulling it back.  I am going to Palm Springs this weekend where it will be 97F, so it will be a real test to see if the tape continues to hold like they way it will.  Sorry for my ranting.... This group is fantastic and everyone is very open and honest.  We are in this together and we are all at different places in the acceptance phase.  I wish only the best for all of us.  

Comment by KarenD on April 17, 2019 at 8:31pm

One idea I am going to pursue about the excess sweating we have where we have lost hair is perhaps botox.  I have read that people have had botox injections along their hairline and it has helped with the sweating.  I am hoping this is true as I would l love to not look like I have just stepped out of a shower when I get hot and the sweat starts streaming down my face.  Not a great look!

Comment by Tessa on April 17, 2019 at 8:12pm

Jules, Australia,

I understand completely. I live in Sydney if you're ever down here. Not as hot as QLD but too hot for me as I'm originally from UK.

Comment by Jules Australia on April 17, 2019 at 7:28pm

Thank you all for baring your soul with exactly what it's like living with this horrid disorder.... it sure  is a test to maintaining our sanity, & I relate to every single one of your feelings,; the desparation, frustration, embarrassment (at times), doing the things we enjoy NOW as much as possible (with thoughts that as this progresses those things may become less joyful). Bloomingdalekid, I admire your tenacity to, as you have said many times, "not let this disease beat you or bring you down' .... That's what I TRY to keep telling myself, but oh boy, sometimes that is sooo hard to keep up. Your hair looks great & I love to hear your positive attitude, so please keep posting; I was wondering though have you experienced the odd, wierd sensations, painful discomfort & scalp tenderness, itchiness etc with ffa/lpp or just the loss. As Sad in Chicago said, wearing a wig or hairpiece in very hot humid weather can be extremely uncomfortable, especially when those ghastly sensory scalp symptons 'rare their ugly head' ... I have had to put up with this many times  & i feel that besides the never ending 'outgoing tide' (hair creeping back from forehead &all around the ears), the scalp sensory symptons have been one of the WORST things to live with (for myself anyhow)..... as for me these sensory symptons are not just in front, but all over, epec on top; it's amazing when I have long periods of much more subdued scalp discomfort, just how much better I feel (much more positive, can 'get on with it'), so to speak; as when the pain feelings are niggling, you just don't get much of a break from the reminder that the disease is ever present; can be quite an eerie feeling, not good for your emotional 'peace of mind'. I love gardening & exercising but the combination of hot weather, sweating (and its been observed that FFA causes EXTRA sweating on forehead in area of hair loss, Gr8, another wonderful side effect :-(() &wearing a hat .... it's not conducive to an already itchy head & hairline. We had close to 6 months of such hot humid weather here in Qld Australia this past summer, & although my scalp has been much less troublesome for a while now, just 5 or 10mins of being in the heat,without any extra effort makes your forehead sweat (b4 ffa I was not a person that sweated readily) ....  , Well I just can't imagine what it would be like in a wig or bonded hairpiece. Winter would probably be ok, but Summers here, not so sure! And yes I agree, only those actually going through this can truly empathise, understand just what it's like; to live & cope with on a daily basis.so thankyou again for being such wonderful support, Love to you all, my FFA/LPP sisters, big HUGS ..... wish it could be in person, if any of you ever come to Auzzie land for a hol, & you find the,time please look me up, ... but for now HUGS online will have to do :-)))  xxx

 

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