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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: 599
Latest Activity: Jul 25
Discussion Forum
Dermatologists who specialize in alopecia?
Started by NorthCarolinaMama. Last reply by LauraLGiraldo Jul 25. 2 Replies 0 Likes
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 0 Likes
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 0 Likes
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 1 Like
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
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Comment by Jen on November 18, 2015 at 4:07pm
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Thanks.
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The base is a high quality lace. I forget the name, like New York or something. Just straight lace, I don't have bonded edges or anything.
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Wyobalance,
Can you describe the way your 4x4 is woven? Is the hair attached to a lace (mesh) piece or some other type of material? Thanks so much. I love it that you found a solution that works well.
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Marian, I did the whole starter kit thing with hairdirect.com They created a frontal piece which was perfect, however I felt it was too much front hair for me. So I cut the small pieces from it and eventually called them personally and asked for a 4x4. You would probably still need to have them to send you the swatches and choose one that matches your hair, and you send them a sample of your own hair. I hope I'm not leading anyone astray. This is what works for me, at least till I lose more hair.
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Marian, do you have side effects from the Avodart?
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Lauren I have also had many rounds of injections with no dents. I am now on Avodart and although hairloss is still creeping along I think these interventions have bought me some time.
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Wyobalance- I took a look on the website and did you get that starter kit with colour swatches and measuring stuff? Or is there a place on it that you can buy hair by the piece without going through that? Did you have to colour or cut the piece you got? Lauren I have been on Plaquinel for Years, I have lupus as well as FFA and and LLP. The trifecta I call it! I do blood tests every 3 months and have field tests for my eyes annually. No problems here... Except you are more sensitive to the sun. I'm a red head from a long line of Irish red heads so I have always been careful anyway.
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Lauren -- no I just did the one round and did not want another. It seemed to speed up shedding, but I can't be certain if there was a causal relationship between the shots and hair loss.
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Lauren, I have been on plaquenal for almost two years. Need bloodworm only occasionally to look at liver enzymes. I take milk thistle daily. Also need to be monitored for retinal changes. So far all is well with everything.
MJ
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MnM, I saw under another conversation that you took plaquenal as well. What does it involve? My dr made it seem like blood testing every month was required and you had to stay out of the sun. What was your experience?
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