Frontal Fibrosing Alopecia

Information

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

Comment Wall

Comment

You need to be a member of Frontal Fibrosing Alopecia to add comments!

Comment by MnM on November 20, 2016 at 10:08pm
Brenda,I'm so happy to hear it! Would you mind sharing where you went as I am in Illinois as well?
Comment by Brenda, IL US on November 20, 2016 at 8:43pm
Curly K and Bu US I got my hair replacement put on. I am so happy!! I wish I'd done it a long time ago. I teared up before I sat down to get the top of my head shaved but no tears fell. I'm posting from my phone and will try to put a pic on
Comment by Lauren on November 20, 2016 at 10:06am
Has anyone had success with cortisone shots? I had one treatment of what the deem said was very very low dose. This may just be in my head but I have this round bare spot where I think one of the shots was given!? Is this possible?? I was not told it could cause hair loss!
Comment by Minter on November 15, 2016 at 12:41am

Hi Joy,

I think mine is at least an inch all the way around too-  so far my eyebrows are thin, but still able to fake it!  I also have been using boostnblend on my brows, that is much better then regular brow powder :-)  I actually got my hair colored a shade darker then earlier, it looks more fuller then when it was a lighter shade, oddly enough-I still use sunblock, I would rather have a bald head then risk skin cancer :-/ also Dr Christos Tziotzios from Guys hospital in London (see the thread above) states that sunblock has nothing to do with this- 

Comment by Joy on November 14, 2016 at 12:40pm

Minter - I got FFA and the lichen on the front of my scalp three years ago after lots of extra medications to help my immune system - that is so funny as I type this - turning 65 had to have those shots for shingles and pneumonia and turned into FFA and lichen - go figure - I only had one big shed - but wanted to let you know that I have dyed my hair the whole time with no ill effects. Hair loss is about an inch all the way around but stopped right after the shed - I am fortunate as my hair covers it and unless I show people they do not notice it.  The lichen is another story - mostly gone but stress and sugar - which we all like when we are stressed - seems to flare it up occasionally - just right in the front and affects maybe three rows of hair.  Makes the base of the hair look slightly swollen but so much less than it was in the beginning.  I have no itching either.  I also have had a huge reduction in the tinitis that I had on the same side that they gave me the shots - and yes that sounds crazy as well.  I do not use sunblock unless going to be in the sun for a long time and then only zinc based.  I have continued the mineral makeup but am still a little conflicted about that.  I am saddened as I wish I knew what has stopped mine as I would definitely pass that along.

Comment by Alopecia Hair Solutions on November 12, 2016 at 4:14pm

If you need help with wigs, hair pieces or hats in the Chicagoland area... check out Alopecia Hair Solutions. They offer PRIVATE In- Home Consultations. www.alopeciahairsolutions.com

Comment by Minter on October 21, 2016 at 7:00pm
Liz, your eyebrows look really nice! I have been tossing around getting my own done, but don't think I'm ready yet. Between you, DeniseC and Claire Julia, seems like it's all happening there in the UK! I'm heading over for a month in the beginning of November & stopping in at Guys hospital to give a blood sample for the FFA study and maybe I'll take a trip to Lucinda Ellory and see what this intralace is all about- it's easier for me to go to the one in London then here in America! :-/
Comment by DeniseC on October 21, 2016 at 6:00pm

That's great Liz. I am assuming it was the same one. She works at Lucinda Ellory part time, and got chatting to me - hence considering her. Will go with her now!

When I had my eyebrows done some years ago now (before I realised the extent of my hair loss and though the eyebrows were 'it') I looked, for the first few days, as if I were a pantomime dame. They were so dark and pronounced. But of course once they settled, they weren't like that at all.

Yep - I need them done again, have put it off for a long time, purely because I am so busy. But this has now inspired me. Make an appointment Denise!

Comment by Sad in chicago on October 21, 2016 at 5:04pm

Thanks everyone for letting me know about your eyebrows.  I am scheduled for Dec. 1  and am also very nervous, but looking forward to not drawing them in everyday!

Comment by Liz on October 21, 2016 at 2:29pm

Hi. Thank you all for your lovely comments about my eyebrows I'm really pleased with them. Sad in Chicago. I've now had them for 4 days. As MnM says they don't scab in the way that other wounds scab. If I look at them now closely I can't really see any scabbing. When I wash them the cotton pad is just a bit brown the same colour as the tattoo.I felt incredibly nervous before I had them done. I put it off for months but I'm due to start a new job so I thought I'd pluck up the courage to get them done and I'm so glad I did. Denise, it was a lady called Sarah who did them. She is based in London. She's a lovely lady who I felt at ease with xx

 

Members (602)

 
 
 

Disclaimer

Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.

© 2024   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service