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 silversurfer on July 8, 2014 at 1:40pm
I have just been told by the tocian I have blepharotis small cysts on the eyelid . The dermatologist also said I have small cysts on my nose my FFA is now about 5 cm back from my hairline and has disappeared from behind my ears. Is it any wonder I am becoming a recluse
Comment by Annie on July 8, 2014 at 1:22pm

Hi all, I'm just wondering if anyone has had the symptoms I'm experiencing now.  My forehead is tender and feels tight.  I also have mild swelling from my hairline to my eyebrows. 

Comment by April on July 8, 2014 at 8:09am
Debs, this is interesting. It seems most of us on here have other health issues and autoimmune diseases. I am also trying to get an appointment with a naturopathic MD to get her opinion on all of this. Definitely let us know what your herbalist says. On another note, just wondering if anyone has any experience with FFA and pregnancy? My husband and I would like to start trying to conceive. I am somewhat nervous about how this will affect my hair loss. It got worse after I had my first child. I know I am losing hair but I've managed to hang on to my eyebrows until this point. Hard not to worry, but trying not to!
Comment by Debs on July 6, 2014 at 1:50pm
I have been diagnosed with episcleritis (an eye condition) it is not a serious medical condtion and my GP referred me to my local eye clinic. The consultant said it is caused by "inflammation in the body and it is not known what causes it"... Sounnds familair ladies! I have steroid eye drops and some froben tablets to reduce inflammarion.

I do follow the anti inflammatory diet however the past couple of months have been extremely stressful in my department at work and I have not followed the diet as strictly as I usually do plus the stress may well have contributed to this eye problem.

I am going to consult a medical herbalist, I went to one of her raw food diets back in February and she is really up to speed on diet to cure/ help health.

Once I have my consultation I will share whatever she tells me with you. I want to ask her to help my control my current inflammation in my body and prevent future medical problems caused by inflammation.
Comment by Jen S. on July 5, 2014 at 6:38pm

Polly - you look great.  I've only been taking the hydroxychloroquine for 2 months, so would prob ably be too early for any significant side effects.

Comment by PamW San Diego, CA, USA on July 5, 2014 at 6:03pm
Hey, Polly. I never heard that can be a side effect. Thanks for letting us know. I like your new photo.
Comment by Polly UK on July 5, 2014 at 5:23pm
I forgot to say that I've been taking Hydroxy for 10 months.
Comment by Polly UK on July 5, 2014 at 5:22pm
Hi all, I had my 6 month NHS appt with my derm last week and the good news is that he thinks my FFA is stable but then he spotted some greyish brown pigmentation on my chin and neck which he thinks is due to Hydroxychloroquine! I've cut down to one 200mg daily instead of 2 but I think it's time to stop as the derm advised me. Shame as I'm sure it worked for me.... has anyone on here experienced any skin changes whilst on Plaquenil/Hydroxychloroquine?
Comment by Classical Anne in NC mountains on June 29, 2014 at 12:48pm

Catherine, I appreciate your description of your experience with severe sunburn.  It does sound like your body was rather drastically affected.  But I wouldn't want you to ruin an otherwise good memory of such a nice long walk on what turned out to be a beautiful day.  I'm afraid the truth is, that if the extreme burn didn't trigger the FFA, something else would have eventually.  Until we learn to communicate with the most basic particles of our own interiors, those of us who are susceptible to autoimmune response, will see it manifest in one way or another, sooner or later.  So sorry that it happened to be your 'crowning glory' In this case, but trust you'll continue to enjoy long walks and swimming.  Glad you liked the link to buffs, and thank you for the link to sun protection cream.  Now let's go outside and have fun!

Comment by Catherine on June 28, 2014 at 2:59am

Thank you everyone. Anne you are right, my doctor was not suggesting that the sunburn itself was the trigger, but rather the shock that my body went through (it was a bad sunburn). I remember that my body felt traumatized at the time and for at leasts 24 hours my heart was beating very quickly as a result of the stress (it was such a stupid thing - I went for a walk on what looked like a cloudy day, didn't put any cream on, the sun came out and I got scorched on my arms and legs). Interestingly, there is a strong link between sun exposure and discoid lupus, which has many of the same symptoms as LPP (and there exists a crossover syndrome between the two conditions). Anyway who knows, but you can imagine how much I regret that walk...

Thank you for the link to the buffs. They look like the perfect thing for swimming and hiking, which I do a lot of. After much searching, I found SPF 50 suncream with titanium dioxide (which as well as zinc oxide offers the best protection according to this great website http://www.ewg.org/2014sunscreen/) and without fragrance or parabens, which I will be applying generously to my head and body! My forehead is very scarred, so I want to avoid pink or white patches if possible.

Thank you all! C xxx

 

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