Comment

Comment by Minter on March 10, 2019 at 9:18am

Interesting, I took part as well but did not receive an email- so glad it is being shared here!  

Comment by Debs on March 10, 2019 at 2:27am

I also took part in the study at Guy’s and received Dr Tziotzios report.  Ladies please all click on the link that Liz has kindly shared.  It gives an answer as to why we have developed FFA and also suggests using JAK medication might well be an effective way forward. 

Comment by Toby on March 9, 2019 at 9:52pm

Wow, Thank you so much Liz for sharing the article about the genome study in the U.K. kind of disappointing to think I have a gene mutation although I am not surprised that FFA is associated with a gene mutation or variation.  The birth control pill thing took me completely by surprise. I took birth control bills for about 2 weeks in my early 30s and did not like the effect on me so discontinued them. I really thought it was SPF in sunscreen and moisturizers and shampoo and conditioner that caused a gene to mutate and that gene controlled hair follicles and auto immunity. Tons of women took birth control pills. Seems like everyone would have this if it was caused by birth control pills.  I just needed to vent and I know all you lovely women are there for support.

Comment by illustr8r on March 9, 2019 at 7:23pm

I think HRT saved my hair! I definitely think it’s hormone triggered because when mine crashed my hair fell out. The same thing happened to another client of my hairstylist. She lost 1/3 of her hair and her eyebrows thinned (but didn’t disappear like mine). Once she got her hormones on track her hair recovered but not to it’s prev glory but at least she can live with what she has. She doesn’t have FFA though. I was on birth control for a short time so something I did in my 20’s makes me go bald in my 50’s?!? So many questions! LOL!

I’m happy to hear that dr might be taking a different approach to treatment because what they do now doesn’t seem to be doing much. It’s such a random mystery-why me and not them?!?

Thank you for sharing the results from the study. Very interesting!

Comment by pauliegirl on March 9, 2019 at 6:46pm

Thank you Liz for the article link! Agreed that it’s pretty technical info but basically looks like all other auto-immune diseases, we are genetically predisposed (gun loaded) and something caused the disease to happen (trigger pulled). I don’t think you need to blame yourself for HRT causing the disease Afraid, I have never taken them! Rather, something I believe in the endocrine-disruptive activity of various chemicals in our environment (be it body care products, pesticides on foods etc) has/have much to do with this. I do think hormonal fluctuation of menopause has a strong potential link. 

FYI I have been on the accutane protocol for nearly 17 months and my loss stopped about 5 months ago. Let’s hope it sticks. I’m not willing to stop the accutane until that tufting goes away. Itchiness and redness are also gone. I have been eating clean for a year and through research have strong feelings about the importance of remaining vegan (have been doing that for 2 months now, and btw I love it and find it yummy and easy!—-I am appreciating YouTube’s with Dr Michael Greger, Dr Brooke Goldner, and various others in the whole food, plant-based world). 

Take care and hang in there, all! 

Comment by Afraid on March 9, 2019 at 6:22pm

Hi Curly K did the live event in FB reveal anything of any interest? 

Thanks Jules Aust for the info re moo goo products and minter for your further recommendation l. 

Hi Liz - thanks for the prompt post re: research from Dr T - I’ve been waiting for the results with bated breath...I need to inwardly digest the data but at first glance it seems I am genetically susceptible (?) and because I’ve taken hormone medication over the years for which I am now going to blame myself for doing... I now have FFA?!  ... if he is advocating JAK inhibitors as relevant treatment I’m not sure that is going to help as there appear to be so many potential side effects...  I was probably expecting too much from this study... 

you are all so brilliant - thank you.  I learn so much more from this group and my relentless internet searches than the NHS.  

Thanks xx 

Comment by Liz on March 9, 2019 at 5:13pm

Hi. As some of you may know I have been part of the genome study. I have FFA as does my mum. I received an email this morning from Dr Tziotzios with some interesting news on the study. With this information Dr Tziotzios and his colleagues hope to look in to new treatments for this condition. Here is the link to the study.

http://www.guysandstthomasbrc.nihr.ac.uk/2019/03/08/scientists-iden...

Liz

xx

Comment by Minter on March 9, 2019 at 8:20am

Hey Jules Australia, thank you So Much for mentioning MooGoo!  The MooGoo box arrived the other day and I love, love, love the shampoo, conditioner and the sample protein shot they sent along as a gift, my hair looks and feels the best it has in a very long while! 

Comment by CurlyK on March 4, 2019 at 5:09pm

For those of you on Facebook, CARF is doing a FB live event at 5:30 pm eastern today. Learn the latest on research from the American Academy of Dermatology conference. 

Comment by Afraid on March 4, 2019 at 4:09pm

Seems like we are all having a ‘down’ time with this silly condition.  My best wishes and good luck to you all.

Will the burning, itching, stinging and weird scalp, skin and facial sensations, itchy, sore eyes, rapidly ageing skin and hair loss continue until all hair has disappeared?!?!  Is there anyone out there who has beaten this?? 

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