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Frontal Fibrosing Alopecia
Information
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 14 Likes
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 0 Likes
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
Trying a new approach with CBD oil...
Started by Robin. Last reply by anettemandell Apr 20, 2023. 31 Replies 0 Likes
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 4 Likes
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
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Comment by Meme on May 15, 2016 at 5:59am
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Hello Celia, I have been off line for a while on holiday in Mull and I refuse to take technology with me. Would love to come to the catch up but can only do June. 5th to 8th. 10th, 12th to 15th, 18th & 19th and 22nd & 23rd. I am going to phone the chap in Cheltenham this week as looking at the photos of me on holiday really brings it home how much hair I have lost. I try not to look in the mirror to much.
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Weight gain and blood sugar imbalance are observable. Along with those who knows what else is going on in our body that is undetected. Frustrating.
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Clearly, drugs are not the answer.....my derms (TWO) have assured me that some drugs "might be worth the try" but, it appears that FFA is absolutely irreversible. Why danger your health and well being by putting drugs that are not known to really help in your body? Not a good idea. We all seem to be dealing with it best we can, let's stay healthy, eat clean, and take care too.
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Sally- I understand you dont want the blood sugar imbalance, but isnt 5 pounds worth your hair regrowth? So sorry this didnt work out.
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Sallylweiss,
I am so sorry. I do not use anything for this condition. I believe that it has subsided. The injections that I had at diagnosis caused a lot of hair loss at the spot and dents in my forehead so I am done. Luckily I have very curly dark hair which I pull forward very effectively and with a little black eye shadow at the hairline and hairspray, I am presentable.
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Comment by sallylwess on May 12, 2016 at 1:15pm
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Ladies, after my reports of being so hopeful about the hair growth I was having with finasteride, I must now report that I am having very unwelcome side effects that I believe are attributed to finasteride. I have experience rapid weight gain. I say my endronchrinoslogist yesterday because I have also experienced blood sugar imbalance due to the sudden weight gain. I have no other reason to account for the five pounds I have put on since February than the finasteride which I started in January. I have not changed my diet and I have actually exercised more recently than I had before February. Sadly, I will stop taking the finasteride.
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Comment by Celia on May 11, 2016 at 2:01pm
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Ladies local to Beaconsfield Junction off M40-please let me know which dates you might be free to come for lunch and to catch up
celiareeve@hotmail.com
I am looking at May, June.
I would always see those dates that fit s all. It would be from about 11 am until 3 pm
Best wishes. Celia
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Gai, and others unable to attend the Carf Conference. Another professional conference that I attend offers a DVD of all presentations at a reasonable price. Too late this year, but I will ask Carf it is something they can consider in the future. Or, maybe some type of go-to-meeting online option. Will see...
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MJ, I will send photos too.
Denise
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Comment by Liz on May 10, 2016 at 2:02am
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MJ, If you message me I'll send you some pictures of my system x
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