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 ChrisC. Chicago, IL on October 12, 2012 at 7:37am

Sorry about your foot, Pam. Hope it is not your right foot. I broke my right foot last June and did the boot and had a cute scooter to get around. The kids in the neighborhood were so jealous. I think it was called a Roll-About. The worst was that I couldn't drive. It doesn't take much to break those little bones in the foot. I was wearing cute shoes to my daughter's college graduation and wasn't watching where I was going and stepped into a sizeable crack in the sidewalk. . . and "pop" I felt it go. First bone I ever broke.It doesn't hurt much but does take 8-12 weeks. I'm wearing heels again but had to do flats all winter. Good luck!!

Comment by PamW San Diego, CA, USA on October 11, 2012 at 6:08pm

Mari, your hair cut looks like mine now. I think it looks great. We are so critical about ourselves! Sandy, I am so proud of you! How does it look? Do you like it? It is easy to wear isn't it?

Last May I hurt my foot at school stepping down from the school bus while on a field trip with the kids. It felt bruised for a few weeks but started feeling better over the summer. Last night I hit my foot against the cabinet and I guess that's all I needed. Dr. wanted me off of it for 6 weeks. I explained that elementary school teachers can't go on crutches for 6 weeks so he gave me a boot. Hopefully, I will be able to return to work in the next few days.

Comment by MairiM on October 11, 2012 at 5:47pm

Here is the awful photograph! You can see how far back my hair is thinning. And the hairdresser has had to use hair from quite far back, but I think he has been very clever, I think it is at the limit, though. In reply to others, the exposed skin is very pale and doesn't tan.

Comment by MairiM on October 11, 2012 at 3:44pm

So sorry, Pam. Will you get some time off work for your broken foot? I hope so. How did you do it?

Comment by PamW San Diego, CA, USA on October 11, 2012 at 2:33pm
I finally have something to think about besides my hair! I broke my foot last night! How is that for another little gift? I am going to see a reason for all of this if it kills me.
Comment by Heidi Short UK on October 1, 2012 at 11:40am

Hi Everyone, I hope your grandchildren didn't wear you out yoo much Celia! This is the address I used when I wrote, Dr.Matthew Harries, Consultant Dermatologist,Dermantology Unit, Salford Royal NHS Foundation Trust,Stott Lane,Salford,M6 8HD. This is the email address that came back with the reply,Jean.Brock@srft.nhs.uk but I haven't had a reply from the email I sent him, so i would say you are better writting to him! Celia I did the same as you this week, I've been using the expensive Philip Kingsley itchy scalp shampoo conditioner and tonic but I ran out so I also used Tresemme. I might get some T Gel shampoo/conditioner as that is good for an itchy head and would probably be good for inflamation and a hell of alot cheaper!! The philip Kingsley one is nice but I haven't seen any great improvement really, well time will tell!

Comment by PamW San Diego, CA, USA on September 30, 2012 at 3:54pm

Today is a much better day. I am not as itchy and don't have the burning feeling. I just wish I knew why today is different than yesterday. What makes one day worse than the others? Thank goodness for the good days!

Comment by Heidi Short UK on September 30, 2012 at 7:54am

I'm sorry you had such a bad day Pam, hopefully you'll have a better one today! I must say I don't get the burning or itching on my head, actually saying that I do get this terrible itching in my salivary glands, I wander if its part of the same thing. I have been to see specialists ear,nose and throat doctors, I've had exploritory tubes and dye passed through my salivary glands and xrays taken, but nothibg is found, they put it down to being allergic to something! So I take antihistamines most days, I suppose with our type of bodies, its all to do with our sensitive auto-ammune systems but I wander if its more relivant to having FFA.(Thats one to ask the dermotologist in a couple of weeks!) Well keep your chin up ladies, it's good to talk! X

Comment by PamW San Diego, CA, USA on September 29, 2012 at 8:17pm

Glad you are doing well, Heidi. I am like you -- I told a lot of people. But, I am selective about the people I tell. I don't want to talk about it all day because then I never get a break from it.

I actually was thinking of all of you today, because I have had an awful day. Burning, itching; and not just my head -- all over my body. Plus I have seen lots of hair flying all over the place today. The only thing that I can think of is -- I had a flu shot yesterday.

I have tried to be gluten free for almost two weeks. I don't think it has made a bit of a difference. Just makes it harder to go out to eat with my husband and friends!

I am miserable tonight. Hopefully tomorrow will be a better day.

Comment by Heidi Short UK on September 29, 2012 at 6:41pm

Hi everyone sorry I haven't been on line for a while. I've been busy at work and although I have kept an eye on whats going on, I've just felt I've got nothing important to say!I think I'm coming to realise that its not suddenly going to all fall out. I still think people don't notice it yet unless I tell them. I think I'm a bit different to some of you as I've told loads of people about my problem! I don't know if its because I want to get my side of the story in before they notice my receeding hair. They all say they wouln't have noticed unless i said, or are they just being polite! At the moment i don't feel so depressed about it, I'm not happy about it but its not overwhelming me like it first did. I do know that having this group has really helped me,just having somewhere to sound off or find out the newest info, so thanks ladies!! I'm going to see a different dermotologist in a couple of weeks so I'll keep you updated.

 

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