Frontal Fibrosing Alopecia

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This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.

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Get Ahead of Hairloss Event plus new information on FFA

by Liz

Sep 12, 2018

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 is my dermatologist. She is a lovely lady and is doing a talk on scarring hair loss . I have been receiving updates on people who are talking at the event and it looks to be worthwhile going if you can get there. I got my ticket via Facebook and filled in a survey to get a discounted price.
Also, regarding FFA, I have been sent an interesting article on FFA stating how it's becoming an epidemic. Whilst chatting about the article to my hairdresser she had heard that there the disease could start as the result of a chemical reaction. An example is when you bleach your hair blond and then go swimming the chemicals in the water can turn your hair green......In the same way if you use a chemical on your hair and a different chemical on your face where they both meet a reaction takes place which changes the structure of the hair.
I used to dye my hair frequently and used face cream so it would make sense that where the 2 met a chemical change took place. In the 80s and 90s mum and me used the same hair dyes, home perms and moisturiser. We both have FFA.
Liz
x

  • up

    Diart

    Very interesting information Liz. It really makes sense to me. This could also explain the sunscreen connection - sunscreen on the face next to the hair that is dyed. Thanks for sharing this. My dermatologist is interested in FFA articles I send her. Do you have a link to that article you can share? 

    1

    Sep 13, 2018

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      Susiewoo

      Hi Liz, I live in liverpool and was diagnosed with ffa 3yrs ago.  I don't really post on here but I would be really interested in attending this event.  I was happy to see that you live in the UK , it seems everybody else on here live in other countries and i dont fully understand the treatments they use.  It would be good to chat and compare treatments with you and see where you are with your journey.  I have found steriod injections worked really well for me but my doctor doesnt want to give me anymore due to skin damage.  I also take 200mg of Hydroxychloroquine, and take cbd oil 40% 2 times a day for the inflammation.  I feel like all the red spots on my scalp have gone and the hair loss has slowed right down, whether this is due to the medication I dont know, or could I be in burn out stage???.  It would be good to hear about your story, I look forward to hearing from you

      Thanks sue x

      Sep 13, 2018

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        DragonandFox

        I’m sorry. But where is the evidence of research for this “theory? Where is the science!?  I get really frustrated with Doctors who hypothesize theories without concrete research!  It’s very hurtful to people who suffer.  Years ago a Dr or 2 who spoke at the Florida dermatology conference on FFA  insisted it was connected to sunscreen!!  SUNSCREEN!  They were advising people NOT to wear sunscreen!  My Derm, a prominent research Dr in NYC was appalled at the irresponsibility! As was my skin cancer specialist!  I use sunscreens that have as little to no chemicals as possible and are reef safe. But skin cancer runs in my family and my aunt died of skin cancer at 32 yrs old.  

        Its highly irresponsible for ANY Dr, no matter how “nice” to make claims based on what they “think” they know!  If she has cracked the code to why and what stimulates this awful disease then she needs to share her evidence based research. Otherwise, it’s anyone’s best guess. Including any of ours.  

        Im sorry to be so passionate but I’m sick of this disease and as my beautiful hair that I’ve been complimented on until this, falls out, gets thinner and thinner, drier and drier, drabber and ruined I get sadder.  I tried long hair and combed front with bangs. (Pathetic) but Nope!  I have to cut it shorter now!  I try not to get depressed about it.  

        Doctors throwing out theories is so not helpful!  What are we supposed to do?  Not use anti aging products?  Great! Go bald, have scarring on the scalp, let wrinkles take over... i can assure, that look will never be “in”. Anyone who wants to find out please let me know how it goes.  :(

        7

        Sep 21, 2018

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