Comment

Comment by Louise on April 28, 2019 at 7:55pm

Hello Minter and Lu,

First I would like to mention that none of us should feel ashamed  of our emotions when it comes to this horrible  condition. Why should we accept this disease or any disease. Sometimes I`m so provoked by this word  acceptance, that I hear from dermatologists, family, friends and even persons with FFA. I myself Will never accept it, I Will fight it whatever it takes when it comes to medication. 

I don’t even know how to cope With it, wigs, hairpieces? Noone who has’nt got FFA can understand the feeling of putting a wig on an itching scalp, often with painful wounds.

Minter, I have a wonderful hairdresser, she is just doing the haircut, I Will wash it before I go there and I never look at myself in the mirror with wet hair, I even coulor my hair with organic haircolour,

Big hugs

Louise

Comment by Minter on April 28, 2019 at 9:22am

Hi Lu,  

I am sorry you feel so down, I have been where you are as well and am sure I will be there again and it is not a fun time at all.  

I just want to say that I was really surprised one day and pleased when my hairdresser said she has taken care of ladies with hair that is much further gone then mine or yours and she is happy to do it because that is why she became a hairdresser is to help people look their best.  

It helped me a lot to hear that and I always remember it now when the last thing I want to do is go get my hair cut or colored because I know I will be sitting there looking like, well we all know what we look like when our FFA hair is wet :-(  the place where I go also has a room off to the back where she says some clients go for privacy when they are getting their hair done.  

I don't know what your place is like, but hopefully they have the same kind attitude my hairdresser does and even though it is awful to sit there and see how bad our really has gotten, it does look so much better afterwards and it is worth it.  Because we are worth it!

I hope you are feeling better soon, it helps a lot to be able to come here and vent, rant, rave, whatever you want to do.  

My glasses are on bare skin too, I hate it, it is very annoying-  another fun quirk of having FFA. :-( yay. 

Comment by Lu on April 28, 2019 at 5:14am

It’s a bad day & I need to vent ...I apologise in advance...

I used to love going to the hairdressers... loved a good head massage, reading the trashy magazines, feeling great after a colour, cut & blowdry .... needless to say I haven’t been to the hairdresser in ages. My hair looks awful - grey roots, too blonde highlights & in desperate need of a cut. I’m too embarrassed to go near the place. More hair has fallen out above & behind my ears - my glasses arms now rest on bare skin, my frontal hairline has gone further back & I’m sure I can feel thinned out spots when I run my fingers through my hair. This is all exacerbating already low self esteem & depression. I applaud any of you who have managed to get to the point of acceptance - I’m not sure I ever will. 

Comment by Toby on April 25, 2019 at 6:43pm

Hi Bloomingdalekid,

I ordered the hairspray you recommended and it arrived today. Just wanted to give you a big “Thank You”. You are a life saver!

Comment by Bloomingdalekid on April 20, 2019 at 10:46am

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 April 20, 2019 at 9:38am

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 April 20, 2019 at 8:32am

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 April 19, 2019 at 2:41pm

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 April 19, 2019 at 12:19pm

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! 

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