Replies to This Discussion

Permalink Reply by Liz Lov on December 28, 2017 at 6:19pm

I've used sunscreens heavily for many many years. Essential when I lived in the middle East for 20 years.
FFA diagnosed 4 years ago. There is only 1 sunscreen I've found that doesn't bring me out in blotches- that is Ultrasun. Recently used their SPF 50 and came out in a red facial rash that lasted for a couple of weeks.

also for years used Boots No7 serum with SPF 15

Interesting thread

Permalink Reply by Mel on December 28, 2017 at 7:53pm

Liz — I just looked up the Boots product on the EWG app and it scores a 6, not great. 1 is best. It has several petroleum-derived ingredients but, most interesting, I see it has retinyl palmitate. That’s also a common sunscreen ingredient and scores a 9, bad. I now avoid it and avoid oxybenzone, etc.

Permalink Reply by pauliegirl on December 28, 2017 at 10:15pm

Hey Ladies! Interesting indeed that there is this consistent exposure to these chemicals among us. I think that some say they didn’t use sunscreen daily but holy bananas the chemicals that are in skin care and foundations etc often include those chemicals and people aren’t even aware of it. My current theory: these chemicals that are known (though not publicized!) endocrine disrupters are used often and for a long time. For some reason, SOME of us are more sensitive to them and react by having our endocrine system disrupted. Then, when we have some form of hormone flux, be it pre/peri/post meno or even medicine used like Tamoxifin, our bodies are affected in that our follicles get messed up and don’t function as they should. We then have FFA. We need something to straighten out these malfunctioning follicles and so far isotretoin (accutane) and a sister drug (I forget the name) are the best bet presently to flush out the messed up follicles. (70+% success rate in halting progression in the researched group...y’all read the article, right? Jess shared it about 2 months ago) Research is coming along but of course we all want more now, right?!

As far as sun protection, absolutely we need it! We just need to be using safe forms of zinc oxide and titanium dioxide, and just plain covering up! It’s crazy, if you read up on the whole chemical SPF topic, you find the dirty little secrets about them as far as how they don’t work great to begin with (skin cancer is on the rise and we are using tons of SPF) and how they are absorbed and then can wreak havoc on our bodies. I found a local herbalist who makes some great sunscreen (as well as now, all of my facial skin care and cosmetics). I am actually thinking of selling the stuff because I am so impressed by how it works and because it is safe. Interestingly it is not costly like so much of the supposed high quality/high-end products are!

Sorry I feel like I just blurted a lot out! Just want to stop this disease in its tracks and sometimes I feel like we are on the cusp of figuring this all out!  

Permalink Reply by Liz Lov on December 29, 2017 at 3:57am

Thanks so much Mel. I'm a bit worried now as I will be spending a lot of time in the sun in January & February. I need to wear sunblock on my nose as I had radiotherapy a couple of years ago to remove a BCC. How can I check how the UltraSun ingredients score on the app?
I then need to find alternatives that don't bring me out in blotches :-)

Permalink Reply by pauliegirl on December 29, 2017 at 9:55am

Hi Liz, Do you have access to the EWG app? You can look up products that are recommended as well as scan barcodes (not all products have been reviewed) of ones you own or are looking at while at the store. In case you don’t, attached are 3 screenshots of the top rated ones (safety-wise)E7DD7B78-7437-4C4B-8534-903E8515AB50.png on the EWG site. There are more, I just stopped at 3 screenshots :) 

Permalink Reply by Liz Lov on January 3, 2018 at 12:37pm

Have just come from a visit to my trichologist Dr Carol Michaelidis at Phillip Kingsley London who says for years she has been concerned about spf in face creams and this stupid condition.

Liz

Permalink Reply by Rachel Germany on January 4, 2018 at 4:05pm

Hi Ladies, I have suffered with eczema all my Life, until I moved to Germany I used Aqueous Cream all over.  On moving to Germany at the age of 26 I hen started to use Eucerins Intensiv Lotion F.  I have only ever used sun screen in holiday as i do not burn easily and often reacted allergically to spfs.  Other than that I was Simply somewhat lackadaisical wich turns out to be good.  Nevertheless I have ffa and will do my research on the creams I have been using all my Life.  Not to mentions the cortisone Cream and ointments which were adminstered to me as a child.  I have been using eucerin hyaloron filler on my Face for well oder 10 years (spf 15), stopped using foundation about 15 years ago but still use concealer  from lancome possibly also with spf.  After Reading this discussion  Natural Cosmetics is the way to go.  Clean eating, Clean Cosmetics etc.  If anyone Haß Tips on an Anti-Aging Cream without spf please could you Let me know.  I have Very sensitive skin ans am easily prone to allergies so can't use many products. Sorry for the long bad text. My Phone is not User friendly with a german Text correcter.

Permalink Reply by Liz Lov on January 7, 2018 at 9:22am

Hi Rachel,
Me too, super sensitive skin and very prone to allergies, food intolerances. Since stopping eating dairy the eczema I had all my life has disappeared. I'm also gluten free now and feel much happier, less bloating, skin a lot calmer.

Liz

Permalink Reply by Flint on January 7, 2018 at 3:36pm

I used a moisturiser with sunblock for years before diagnosis but sunblock used elsewhere hardly ever. 

I have lost my leg and arm hair also. My dermatologist is one involved in this research. The result was inconclusive. I do not use sunblock any more though!

Permalink Reply by DragonandFox on January 30, 2018 at 8:52am

We had this conversation in this group a couple of years ago.  There were two dermatologists at the hair conference who, without a lick of evidence, declared spf the source of our issues.  Not just my regular dermatologist, but Dr Bordone, the LEADING dermatologist on the first funded study in the United States , told me that was exceptionally IRRESPONSIBLE to make such a potentially dangerous claim without having done research!  

I agree!  I do not think it’s safe to scare people about SPF from a “gut feeling”!  SKIN CANCER KILLS!!!    

Permalink Reply by Kikzy on January 30, 2018 at 10:34pm

Wow. This was an "aha" moment for me, too. I have used SPF 100 on my face for years. I never had connected it with my hair loss and recent diagnosis. I will stop tomorrow. Has anyone noticed an improvement in hair since discontinuance?

Thank you for newly found hope. 

Permalink Reply by Airam-FFA on February 12, 2018 at 4:07pm

Sadly, no improvement since stopping using SPF creams! I think that once FFA is ‘triggered’ you need to wait until it ‘burns’ itself out! Oh, that they can find something else to ‘trigger’ a reversal of hair loss!!!

• ‹ Previous
• 1
• 2
• 3
• 4
• Next ›
• Page