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: Nov 25, 2024

Discussion Forum

Food Allergy Testing question

Started by NorthCarolinaMama. Last reply by lordiron Nov 25, 2024. 10 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

CARF Conference 2018 Notes

Started by CurlyK. Last reply by kevinsstelly Jul 14, 2024. 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

Comment Wall

Comment

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

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

Comment by Jules UK on April 25, 2014 at 8:56am
Celia, I had no luck with getting a prescription because Dr Harries would issue it. It then needs to be redeemed with Salford Trust's own wig supplier. Seems very bureaucratic and not in the patient's best interest.
Comment by Celia on April 25, 2014 at 8:44am

Jen - I have had 3 rounds of steroid injections.  Could not notice any benefit - but 1 year on I am left with a concave ridge across my (current !) hairline and vertical veins showing across my forehead from the hairline each about an inch or so - not very pretty !  I would never have them again.

Jules - so glad you are getting your hairpieces organised - look forward to hearing that it all goes well.  Were you able to get the NHS contribution towards them ? If you did - how did you do it ?

Liz - that's great that you have found something to offset the awful feelings that surround this condition.  Well done ! I haven't got there yet.  I have asked Dr Harries if he can recommend a derm a bit closer to home and so I'm waiting for his response.

Debs - my appt with Belinda is June 26th at 1pm.  She is fully booked until then !

Comment by Jen on April 24, 2014 at 1:06pm

The information provided is really helpful to me. I am very grateful. It is important that I find a solution so that I can move forward confidently without having to worry about the wind or any other adverse condition. The steroid injections do not help and I am afraid of any medication.  I hope that others on this site find this useful.  Thanks to both you and Pam. 

Comment by Jules UK on April 24, 2014 at 12:18pm

Well, Pam keeps hers on all the time in between hair appts, so about 6 weeks.  Sounds wonderful!  I hope she doesn't mind me talking about her like this! :)

Comment by Jen on April 24, 2014 at 11:19am

Thank you Jules,

Wonderful feed back.  I suppose you can shower with them for a few days.

 

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.

© 2025   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service