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: 602
Latest Activity: Jul 14

Discussion Forum

CARF Conference 2018 Notes

Started by CurlyK. Last reply by kevinsstelly Jul 14. 32 Replies

CARF 2018 Conference Notes:First of all, I am so glad I went to the CARF Conference! It was worth every dime I spent – a true investment in myself, but hopefully I can bless and encourage others from what I learned.The CARF staff and volunteers are…Continue

Botox and FFA

Started by 2Dachshunds. Last reply by Shawnaynay Jul 8, 2023. 18 Replies

Hi Everyone: I remember there is a women on here who connected Botox to FFA. I was given the article, Frontal Alopecia after Repeated BotulinumToxin Type A Injections for Forehead Wrinkles:An Underestimated Entity?Antonino Di Pietro a Bianca Maria…Continue

Tags: Botox, FFA

Trying a new approach with CBD oil...

Started by Robin. Last reply by anettemandell Apr 20, 2023. 31 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

Man with FFA. New member.

Started by Thomas. Last reply by Thomas Nov 23, 2022. 27 Replies

Hello,Thought I’d share my experience, as one of the few men with FFA, in the hope that it will be useful to others. It’s possible that the condition progresses and responds differently in men. I’m 40, live in London and otherwise healthy.I first…Continue

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Comment by Halfbakedwho on April 3, 2019 at 1:04am

She is a caring friend. I took her up on that! Thank you so much CurlyK. 

Comment by CurlyK on April 2, 2019 at 7:14pm

Anyone in central Florida area who would like to get together to talk, I’m available. I’m in between Tampa and Orlando and happy to be a caring friend. 

Comment by Louise on April 2, 2019 at 6:43pm

Hi Kandy15,

I have just read your comment and I am so sorry for you. You are not alone when it comes to depression, fear, anxiety, I feel exactly like you. I was diagnosed three years ago and since then I have been on Plaquenil, Finasteride and lately Methotrexate, a strong immune suppressive drug. I thought for a short while that Methotrexate really halted the progression - but no. It seems that nothing helps. My depression is so deep that I need sleeping pills every night and antidepressives every day, I am a real drug addict. The antidepressives helps for the panic  attacks but not against the deep depression. For the third time I have tried to consult a counceler - a women in my age (70) who really don´t understand what I am going through, she strongly believes that my depression is an age issue BUT I keep telling her that I have no problem with my aging process, I think I am quite fit to be and old lady and that everyone has to go through that BUT it is not normal to loose your hair and to have a hurting scalp. The ignorance around us is the worst thing to cope with. I have the same experience with the staff in the wig shops. They really don´t care - they will just sell a hair piece.

You live in Florida and I have a summer house near long beautiful beeches and this year I don´t want to go there and  I don´t want to have visitors in the house. This is really an awful condition. We all miss our old selfs

Hugs from Louise

Comment by Plf on March 29, 2019 at 7:48pm

Go girls, thanks for all the practical tips there fantastic.

Comment by Toby on March 29, 2019 at 9:26am

Thank you Minter, I will check out the Revolution product as I am not familiar with it.  

Comment by Minter on March 29, 2019 at 8:15am

Yes, that is the same way I use boost n blend- like a salt shaker on the top of my head where the part is or where it is thinning-

I use the Revolution root cover up powder with a brush in front of my ears and usually blend the light and dark browns (depending on how far along it is until my next hair color appointment) and nowadays I have to also take the brush and go along the hairline at my forehead blending it all in and pushing it in about an inch or so to the hairline, seems to look okay and not noticeable at all when I do that.  I sometimes use my brow powder to blend in along the hairline as well. I've gotten pretty good at it so it really takes no time at all!

Comment by Anonymous on March 28, 2019 at 7:20pm

Thank you Toby and Minter for responding to my question. It's nice to get feedback on products.

Comment by Toby on March 28, 2019 at 9:11am

Anonymous, people have good results with Toppick so I recommend it. The trick is to get the right color so you may want to order a small size first. The colors may run darker than you would think.  Basically you use any medication (like clobetosol first), then style your hair and then shake on Toppick. Kind of like shaking a spice shaker on your head or grated cheese. Quick and easy and it does make the bald spots in your head disappear. Or wide parts disappear. You would not use it for your forehead area where we lost hair. I have bangs to cover that area and am going to try some shaded eyeshadow to blend with my hair color for the forehead area.

you can order Toppick online and Sally,s beauty carries Toppick but my local Sally’s did not have all the colors. I ordered online. There are also videos online of how to apply Toppick.

hope this helps and have a wonderful day!

Comment by Minter on March 28, 2019 at 8:51am

Anonymous, I've never tried Toppik- I've read about it, but I guess because I've been using boost n blend for quite a while now and know it works I don't want to take a chance on anything else-

in other words, I'm being cheap and set in my ways ! I don't want to spend $$ on something different even if it might be better ;-D 

Comment by Minter on March 28, 2019 at 8:49am

Doesn't it feel great to get a compliment about our hair!  It happens so seldom that when it does occur, it really does feel like floating in a little cloud of happiness after receiving the nice words :-) 

I'm sorry you got a cold, hope you are feeling better soon and haha, hermit ways- yes!  I can relate to that & sometimes I quite enjoy my own hermit ways nowadays!  

 

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