Get Ahead of Hairloss Event plus new information on FFA

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

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Replies to This Discussion

Permalink Reply by Diart on September 13, 2018 at 11:25am

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? 

Permalink Reply by Liz on September 13, 2018 at 1:57pm

Hi Diart

It's interesting isn't it. Here is the link.

http://www.dermatologytimes.com/article/frontal-fibrosing-alopecia-...

Liz

xx

Permalink Reply by Susiewoo on September 13, 2018 at 4:10pm

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

Permalink Reply by DragonandFox on September 21, 2018 at 8:16am

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.  :(

Permalink Reply by Rose on September 21, 2018 at 7:10pm

Hello DragonandFoz I’m very interested In what type of sun screen you use thanks also do you wear make up as well. Thanks 

Permalink Reply by Liz on September 26, 2018 at 1:42pm

Hi DragonandFox

I like to keep an open mind on the cause of FFA. I don't say that it is definitely caused by sunscreen and I don't say that it's not. I rarely used any type of sunscreen on my face as either a child or adult....I've probably put it on maybe 6 or 7 times in my life. I do however think that it could be caused by a chemical reaction between the things I have used on my hair and those I used on my face. That makes sense to me. I used a regular moisturiser as a teenager and continually dyed my hair as well as doing home perms. My mum and I used the same products. Very little in medicine is concrete, much of it trial and error. The 'professionals' I see as part of my FFA journey may give me opinions and say FFA 'could' be caused by certain things. I'm more than happy to listen to them because it means they are part of my journey...I have chosen them carefully and I'm more than happy to listen to what they have to say. 

xx

Permalink Reply by Overthis2018 on December 6, 2018 at 2:45am

Case study.  Ffa regrowth after stopping sunscreen. I apologize if I did not do this right.  I am having great difficulty using this site on my phone.  If it did not work please google Search : frontal fibrosing alopecia regrowth after cessation of sunscreen on forehead  

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Permalink Reply by Diart on December 6, 2018 at 10:36am

Thank you for sharing this! I believe the chemical reactions could be key. I've worn sunscreen since it was invented due to burning easily and loving the outdoors. I'm going to share this with my dermatologist who is willing to read the research.

Permalink Reply by Overthis2018 on December 6, 2018 at 1:09pm

No problem.  I find this extreme interesting because I switched to moisturizers containing sunscreen and started using bb creams(all of them contain sunscreen) a couple of years before my hair loss started. I have sensitive skin and it's very difficult to find a good moisturizer and make up that doesn't contain sunscreen.  

Permalink Reply by Overthis2018 on December 6, 2018 at 3:21am

Actually. While searching this topic in Google as : "frontal fibrosing alopecia" sunscreen - I see there has been a lot of research in this area in the last couple years.  One study on research gate says they have found titanium in ffa hair follicles.  And that it may be the cause of the "lichenoid" reaction.  This is really blowing my mind because I have used moisturizers with sunscreen for years and started using bb creams with sunscreen a year or two before my hair loss started.  Prior to that I had never used foundation or bb cream.  Everything has sunscreen in it.  

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