Replies to This Discussion

Permalink Reply by Minter on July 18, 2017 at 1:05pm

I am 52 and I do not have any other autoimmune issues other then my hair that I know of, I have used sunblock for years and years and the last few years I have been using the spray coppertone sport SPF 50 on my face/neck/arms/legs all summer long.  I do have a zinc sunblock, but to be honest, when I am out and about, I don't want to mess around with rubbing it on and almost always reach for the spray sunblock as it is easy to use and it covers everywhere.  

Permalink Reply by Christi Q. on July 18, 2017 at 1:05pm

I get very itchy and bumpy when I use SPF on my body, so I stopped using it a couple of years ago.  However, I continued to use it in my makeup foundation and bronzer up until I was diagnosed with FFA under a year ago.  Now I won't use any makeup products that contain SPF.  I fight to save every strand of hair I can.  I use Rogaine daily and take Dutesteride once a day.

Permalink Reply by pauliegirl on July 18, 2017 at 3:53pm

Thank you Christy Q for your reply! Good for you! Have you noticed any further loss after diagnosis/after you stopped using products with sunscreen? And also with your dutasteride? Good for you for stopping use of those products! Did anyone advise you to do so?
Thank you Minter for your reply as well. May I ask, do you still have apparent inflammation? Might I suggest stopping use of that sunscreen product and using only physical sunscreens going forward, and only those with physical sunblock only ( zinc or titanium)?
A little more info on my reasons for asking/saying these things: on recent vacation I noted intense, intermittent "tingles" in both hands and the only thing I could equate this with was use of SPF on my body as we were in the sun often. I also had the sensation a couple weeks earlier after applying sunblock to my patient. Thinking on this further, I had tingles on my arms several times when on a beach vacation in Florida a year ago and this was when I was applying sunscreen to my body often also.
My aha moment was last week after vacation and I put all this together when I noted the hand tingles to be dissipating. I stopped the use of my daily SPF facial skin care products. I no longer have any tingles AND my hairline is just about free of visual appearance of inflammation at and around the follicles. As well, I don't have itching or burning around my frontal hairline. AMAZING!!! I will attach an article I have since found from the Belgravia Institute for Hair Loss that says there is increased incidence of FFA patients and sunscreen use. While they seem to think there is possibly a thyroid issue (mine have been tested twice since diagnosis and were all normal) and that there is a possible though inconsistent link with hormones, sunscreen appears to be the main link. I still think there must be some sort of perfect storm of factors though it seems to definitely include chemical sunscreen. OMG guys! Think about it. FFA was just named in 1994. When did we start to see SPF regularly and on the rise since...I would say late 80's! I am so encouraged for all of us that there is hope in stopping this crappy disease!!

https://shar.es/1T3MWt

Permalink Reply by Mel on July 18, 2017 at 4:37pm

Related research was posted on this site. I do also think Wellness Mama, the link you posted, is good. EWG also has info about sunscreen and the dangers of nanoparticles. As you may know sunscreen has been killing coral reefs.
To answer your question yes, I had previously used it. I'm not a big sunscreen wearer, however over a lifetime I wore it. In my 20s I was in the sun a lot. And in my 40s I rode my bike a LOT so wore sunscreen for that. In addition, when I threw out all products with oxybenzoate and related ingredients I found there were many more products beyond sunscreen that were in my cabinet that contained sunscreen ingredients.
Post FFA diagnosis I purchased products that are nonnano and contain only zinc or titanium dioxide (I think that's the other OK ingredient??). I don't turn white and they are easy to rub in. The products work well. Kiss My Face is a little greasy, but the MyChelle product rubs right in. I use the Badger face stick when working out. Otherwise I use a BB cream for makeup that contains a safe sunscreen.

Permalink Reply by Mel on July 18, 2017 at 4:39pm

Why risk using the typical sunscreens? It's not worth the risk, especially for FFA folks. Plus the other ones are bad for the environment.

Permalink Reply by Mattsmate on July 18, 2017 at 4:52pm

Hmmm, I have been using moisturizer with sunscreen in it for 10-15 years.

Permalink Reply by pauliegirl on July 18, 2017 at 5:29pm

Mel, Thank you so much for your input! New-ish to the FFA group, I hadn't seen prior topic of SPF concerns. ; i must not have looked far back enough in discussions... I very much appreciate hearing your experience with sunscreens AND your thoughts on advice on the safety points. I had never heard of EWG and just googled it. I will probably spend a good amount of time on this website! (For those like me who hadn't heard of it: Environmental Working Group...an American environmental organization that specializes in research and advocacy in the areas of toxic chemicals, agricultural subsidies, public lands and corporate accountability. It is a non-profit.) 

I am very interested in the products you mentioned. Thus far in this new-found odyssey of chemicals that have a potential to hurt us, I discontinued all products on my skin except a cleanser, toner and moisturizer from a trusted local woman at a local farmers' market, and otherwise just coconut oil. I have plenty of research ahead to find other safe items. 

I wasn't aware that sunblock was hurting coral reefs :( Go figure, right??

Mattsmate: Thanks for your reply. Yep...I think this is going to be a verrrrry common response. Please check the ingredients for your health's sake! 

Permalink Reply by Mel on July 18, 2017 at 5:58pm

Google "Time magazine sunscreen coral reefs."
Coconut oil is a good natural moisturizer. The EWG app also allows you to scan bar codes while shopping. If they have researched the product a safety rating will pop up.
I don't know if there's a way to search this site but the sunscreen research was part of the posts on some type of conference...CARF??

Permalink Reply by pauliegirl on July 18, 2017 at 6:08pm

Mel, Fantastic: thanks for the tip on the bar code scan app! That should be very heplful. And the coral reef article: fascinating yet disturbing. Why isn't this stuff getting more press?! Is the personal product ("health' and beauty) industry that powerful that the concerning information seems to be being kept relatively quiet?? (vs in my perfect world where it would be being shouted from the mountain tops??!)

Permalink Reply by Mel on July 18, 2017 at 7:03pm

Such great questions!! I don't know the answers, but I think Cingress will need to change the law regarding what FDA regulates. And until we really know what causes FFA or cancer, for example, we just get the drip drip of research stories... nothing conclusive! :(

Permalink Reply by pauliegirl on July 18, 2017 at 7:11pm

Interesting! Point taken that it will take regulation and legislation to really shore this stuff up. As I was posing my theory to my GP yesterday, she also said it's a matter of time before we find the true effects of chemicals like asparatame, etc. I would add to that the chemicals used on grown food (like round-up...UGH) and chemicals given to farm animals etc. Bottom line, imo, we have to be vigilant and our own advocates for our health whether it be while in the hospital, with our own physicians and, now I am understanding more each day, with chemicals that we are exposed to.
Thanks again for your input. I really appreciate it!

Permalink Reply by Jess on July 18, 2017 at 10:13pm

I've been using Aveeno Postively Radiant spf 15 or spf 30, and Aveeno Calming Effects spf 15 on a near daily basis for about 10 years. I've switched them out with each other on and off. Not sure if they contain zinc or titanium. Although I've seen some speculate that there could be a relationship, I've been reluctant to quit using them since the medication I'm prescribed for FFA makes me sensitive to the sun.

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