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: 601
Latest Activity: Jul 8, 2023

Discussion Forum

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

Dermatologists who specialize in alopecia?

Started by NorthCarolinaMama. Last reply by tcasal Nov 2, 2022. 1 Reply

Hope everyone is having a great weekend!I'm a freelance writer working on a story about alopecia. I need to find a dermatologist at major hospital or teaching institution to interview -- any suggestions?I've already reached to physicians at Duke,…Continue

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Comment by Norfolk Girl on August 12, 2014 at 10:44am
Hi CJ. I was diagnosed with FFA two years ago at which point my hairline had stopped receding but I had lost about an inch and a half. My bigger issue is however the almost complete loss of my eyebrows which were Kate Middleton like! I am having eyebrow tattoos from Belinda Hayle in September which I am really looking forward to! I have seen Dr Farrant twice, once about six weeks ago as I thought my hairline had started again(itching and redness) and he prescribed Elocon scalp lotion (momenta some furoate) which is a steroid lotion. At present it appears to have done the trick. I live in Norfolk so not exactly convenient for Dr Farrant in Sussex but I do think he is good. I have seen him privately both times. Interestingly I got nowhere with one visit to the GP about three years ago but then investigated the idea of eyebrow transplant and it was the trichologist who thought I had FFA and referred me to Farrant. By the way eyebrow transplants are a nO no as they are thought to be likely to set off the FFA.
Comment by Debs on August 12, 2014 at 10:13am
CJ my email is debs-007@tiscali.co.uk please contact me and i will send the fact sheet immediately.
Comment by Jules UK on August 12, 2014 at 9:27am
Hi CJ, Dr Farrant is a member of the steering group that I'm part of so he ought to know a lot about alopecia! You'll find from Debs' fact sheet that there,a a variety of treatments, none with proven effectiveness. The advice from Drs is always that you choose what you want to try. Difficult decisions. I'm seeing a new derm on Thurs, recommended by Dr Harries, at Solihull. So no more travelling to Salford.
CJ, I'm sorry you've got this but echo comments made by others. You will eventually reach a Point where you no longer dwell on it quite so much. To start with, though, it's hard. X
Comment by CJ on August 12, 2014 at 5:48am
Thanks for replying all. The doctor I am looking at seeing is Dr Paul Farrant. Has anyone heard of him? I can't get to Salford easily to see Dr Harries - if he even does private? Thanks Debs. Still trying to figure out the site so not found messages yet.
Comment by Celia on August 12, 2014 at 5:07am

Hello ladies.  I am due to see a new derm recommended by Dr Harries as I asked him to refer me to someone closer to home.  The name is Dr Iaisha Ali a female derm at Charing Cross - I see her in October.  Pam, your hairpiece did look good and I would not have known you were wearing one.  I know that Jules now wears one with success too.  Haven't quite got there yet.

Welcome CJ - whereabouts are you ?  Perhaps we ladies with close M25 access would like to get together again before the end of the summer ?

XX

Comment by Debs on August 12, 2014 at 5:02am
CJ I have sent you a message but if you do not pick it up please email me and I will send you a fact sheet I have typed up to bet yourself up to speed.
Comment by Pam on August 12, 2014 at 4:00am

I do agree with the comments made by Meme. My FFA has been with me for some years, and at the end of the day you just have to come to terms with it, and not let it ruin your life too much!

I have been extremely pleased with my hairpiece, as it has done what I wanted ie make me look a lot better and give me back my confidence!

However, there are some obvious limitations as well, for instance, I couldn`t leap into the surf this summer like I usually have in the past! I can swim in the sea, but too much surfing in strong waves could just be a bit too much.

But hey ho, my friend can`t surf any longer either as she has had ear surgery which has gone wrong, and left her deaf in one ear, and sea water could cause further damage.

So we all have to cope with some issues in life, and the one I have been handed out is FFA. I hate it, but I won`t let it wreck everything for me!

Comment by Meme on August 12, 2014 at 3:37am

Hi CJ, I have had FFA for over 10 years now. When I first noticed my hair receding I went to the doctor straight away. But not to bore you with a very long story, the nhs doctors at my local hospital hadn’t a clue and basically weren’t interested. I have recently seen a doctor at Guy’s hospital who I found from this site who is trying to research into ffa but even he was upfront and admitted there was no magical cure. I personally have never taken any of the drug treatments (not that I was offered them anyway) however if you read back over the correspondence on the site several ladies have with varying success. Some of us met up earlier in the year and this I found really helpful as one of the ladies has gone down the route of a hair piece which looked amazing, you really couldn’t tell. I know that that is the route I will next have to take. I didn’t want to write in a negative way I’m just being honest and I am sure the other ladies will tell you that we have all learnt to cope in our own ways.  If you think seeing another doctor will help go ahead . I know some of the ladies do see private doctors. It might be worth while putting a message out asking if anyone can suggest or recommend a doctor.

I hate my ffa but I have put it in perspective and I am just getting on with my life. I wish you all the best and if you just need to talk sometime you are welcome to private message me.  Meme

Comment by CJ on August 12, 2014 at 1:48am
Hi PamW thank you for replying. It is difficult to know where to start and the nhs doctors just aren't taking me seriously so I think I will stay private for the time being. Is planquenil the anti malarial drug? I have tried to do a lot of reading around the subject but am feeling very emotional about it all. Have many people managed to get it to slow down or stop at all? Mine is already an inch and a half back.
Comment by PamW San Diego, CA, USA on August 12, 2014 at 1:26am
Hi, CJ. I think everyone here will tell you that it is very important to start treatment as soon as possible because many of the treatments can take months before they begin to work. For example, Plaquenil can take 3 to 6 months to work. Since the hair loss is permanent, you want to stop it or slow it as soon as possible. Can't advise you about the doctors in the UK, but I know several,of the ladies on this board have seen Dr. Harries (sp?). Best of luck to you.
 

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