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: 599
Latest Activity: Jul 25

Discussion Forum

Dermatologists who specialize in alopecia?

Started by NorthCarolinaMama. Last reply by LauraLGiraldo Jul 25. 2 Replies

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

Food Allergy Testing question

Started by NorthCarolinaMama. Last reply by DragonandFox Jul 22. 11 Replies

Hello!I was wondering if anyone has been tested for food allergies to determine if a particular food is causing inflammation, which in turn could exacerbate FFA. I had the skin test a couple of years ago at an allergy clinic, and it came back…Continue

Hair Toppers

Started by Leni. Last reply by Lang Bozic May 22. 10 Replies

I am interested in getting a topper but don't know where to go for one. Having one of those weeks when the hair keeps falling and I am not feeling very comfortable. I don't want to spend a lot of money. Thinking of ordering off the internet. Please…Continue

Get Ahead of Hairloss Event plus new information on FFA

Started by Liz. Last reply by Carol Aug 7, 2025. 11 Replies

Hi I don't post on here much so I may well be giving information which you might have been discussing already. Are any of you in the UK going to the Get Ahead of Hairloss event in London at the end of September? It has been organised by Dr Wong who…Continue

Comment Wall

Comment

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

Comment by Celia on April 27, 2014 at 5:37pm

Oh lovely upside down Anne ! That is tooooooooooooo bad ! And you have gathered so much info that you might have been able to share - you must feel so fed up ! Things can only get better and I am sure I speak for the group in that you have added so much to our forum over recent times.  Don't give up or go and eat a bar of chocolate or other things that are apparently bad for us.  So sorry.

Your eyebrow tattooing is something now to focus on I hope.  I am having mine touched up/renovated (!) in June - had hoped for earlier - nearly 18 months after the initial procedure.  You will be so pleased that it will put recent events out of your mind.  X

Comment by Classical Anne in NC mountains on April 27, 2014 at 5:30pm

Anne, I am SO sorry about your group miss.  I know just how frustrating and disappointing that can be.  I wondered about a meeting on a Sunday afternoon -- is it possible somebody just gave you the wrong date?  Well, as they say, keep your chin up -- and in your case you seem to have got that conquered!  I love your upside down photo -- just makes you head and shoulders above the rest of us.  Keep the faith,

Classical Anne

Comment by Anne Louise on April 27, 2014 at 5:20pm
I really need to vent. I've been feeling cursed with this FFA, now I know I am! If the canceled eyebrow tattooing two weeks ago was tough, today was even worse. I drove 45 min to a CARF support group meeting and there was no one there. I even showed the meeting info to the security guard to make sure it was the correct place and he said I was at the right place. I waited 45 min and finally decided to leave. I had email contact with the group coordinator a few weeks ago, so she knew I was planning to come. I sent her an email asking what happened and am still waiting for a reply. I'm glad you ladies are here 24/7... you never cancel on me! Thanks for listening.
Comment by Liz on April 27, 2014 at 4:17pm

Jen. Yes it's the Vesta hairpiece. My wig voucher covers £130.00 towards the cost of a wig, twice a year. If you get one of these, Income support, Tax credits, Job Seekers, ESA, Pension Credit or you have a partial or full help certificate you get the full £130.00. xx

Comment by Debs on April 26, 2014 at 9:13am
GPS are not used to doing wig prescriptions but they do have the authority !!! Mine had never done one before mine. Just advise them to contact the surgical appliances department of the NHS trust and they will sort it out. X
Comment by Jules UK on April 26, 2014 at 5:08am
Thanks for the info! I did try my GP who said they didn't issue these prescriptions and to contact my derm. I'll go back to them. X
Comment by Debs on April 25, 2014 at 5:02pm
NHS wig prescriptions are raised by any doctor ( GP or a derm) they must contact the surgical appliances dept of their NHS Trust, the surgical appliances staff then raise an order number, you are sent a letter, the letter gives you the order number and details of whatever wig shops they have a contract with. You book appointment and just tell them the order number for their accounts. How much you get depends on the NHS trust. I get £240 per annum but the prescription charge is £63.. I find buying I mine with VAT deducted is about the same price as using the NHS.
Comment by Celia on April 25, 2014 at 4:08pm

Thanks Pam for that info - I hope, Jules that you can obtain this and use it retrospectively. x

Comment by Pam on April 25, 2014 at 11:37am

I got an NHS prescription toward a wig/hairpiece from my local doctor. I can be used at named suppliers.

Comment by Celia on April 25, 2014 at 10:31am

Jules - I thought the GP initiated this at the request of the patient.  If Dr H gave this then the money would presumably come out if Salford's NHS budget whereas if your GP provides the paperwork then your local health authority would comply. Whatever is given can be spent against whatever you wish, I think it is like a voucher.   I thought so and I'm almost certain Pam was able to have this. Have you asked your GP.  I understand that as an alopecian (awful isn't it !) you have an entitlement to 'wig money'. x

 

Members (599)

 
 
 

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.

© 2026   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service