Comment

Comment by Afraid on March 19, 2018 at 10:46am

Wouldn’t it be marvellous if a dermatologist undertook to carry out an analysis of all themes that emerge on this FFA forum?!  There are so many  similarities and of course individual differences.  Surely the anecdotal information is crucial to a deepening understanding of the difficulties we face with this condition and the seemingly global scattergun approach to intervention!  

Comment by Lynn555 on March 19, 2018 at 10:45am

Hey guys, there has been a change in my scalp. I now have raised pimple and bumps. I'm going to the walk in clinic as soon as they open. It was really burning and itching. I want it to simply be folliculitis but I think it is scarring alopecia. My picture matches another online for this. Here is my scalp. My husband took this last night with his macro camera. IMG_8823.jpg

Comment by Pascal on March 19, 2018 at 10:13am

Why can't this comment wall be organized by themes? This is so confusing...

Comment by Pascal on March 19, 2018 at 10:12am

Adie503 I think as you do; it has to be gut related; I have celiac disease, and more than 15 years of serious problems related to gluten consumption. In my case, everything started with celiac disease which unfortunately was undiagnosed for 15 years :(

Comment by Pascal on March 19, 2018 at 10:09am

Liz Lov thank you for your suggestion, I'll find and read Medical Medium and Thyroid Healing by Anthony William; Jess I also have rosacea and also Hashimoto's and celiac disease. 

Comment by Jess on March 19, 2018 at 2:14am

AnnieMay, a study was just published that reports a link between FFA and rosacea. I also have rosacea. It was at its worst about 18 months ago. My cheeks were flushing and super hot for no reason almost every evening. It seemed to have calmed down for a while but is now acting up again. Here's the link to abstract. http://www.jaad.org/article/S0190-9622(17)32328-9/fulltext

Comment by Adie503 on March 18, 2018 at 9:36am

@Pascal  the hair I lost on my forehead has not grown back.i don't think it will. That skin is shiny and thin. So not all of it has grown back but I really believe if I don't stress and continue with this diet I can save the hair I do have. When first diagnosed I saw strands of my hair everywhere, not anymore. No one can tell me that this disease is not "gut" related. I'm no longer bloated, I don't feel lethargic after eating, I don't have a cotton brain sensation, all things I would feel after eating carbs, gluten and sweets. 

Comment by Pascal on March 18, 2018 at 5:12am

Adie503 your beforeand after pictures are amazing; Did your hair grow back? Is this possible with FFA?

Comment by pauliegirl on March 18, 2018 at 1:45am

 It’s late here in Chicago and I had decided to start dictating these posts versus typing on my phone. So I hope that the typos/AutoCorrects that I didn’t proof for have, if nothing else, given you a laugh :-) I do actually just have two arms ;-) and menopause has been a hell of a lot longer than a minute  LOL! Good night all! 

Comment by pauliegirl on March 18, 2018 at 1:39am

As far as medications are concerned, I believe that the best thing going right now is treatment with Accutane. Jess shared a research study out of Poland back in October and after taking Accutane for one year and then stopping for one year.  FFA patients showed a 75% chance of halting progression of the disease. Accutane has something to do with straightening out the oils/follicle problem in FFA.  started Accutane about November 1 of 2017 so we shall see how that goes. Also in my research I have seen that a drug called Actos seems to straighten out the damaged lipid pathways in our follicles. This drug must be used on a short-term basis, under one year, because of the possibility of developing bladder cancer. So the bottom line is that there is something wrong with our oil and follicles, seemingly predominantly around the face. 

For emotional help, as I was struggling with too many crying jags, melt-downs and just a sense of this disease not allowing me to enjoy life so often, I went to a really great gal who taught me “tapping” or EFT. It is like meditation and touching acupressure points and self-talk all wrapped up together. It seems hokey but I believe that it has made a big difference! Taking stress to a manageable level is as important as healthy diet and medication! Just google EFT if interested!
Last, (and you thought this would never end!) I will see a functional medicine doctor 3/29. Combo of western and holistic medicine. I really need someone to look at the whole picture and be able to take some time with me. Also someone who will look at the nutritional aspects of illness/wellness. I am super tired of internists/rheumatologists/dermatologists who don’t/can’t look at the whole picture and really pull this apart!
Hoping something I said helps some of you. While I have been quiet and just reading on and off for the past few months, I appreciate everyone’s sharing, caring and even your sense of humor at times! XO

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