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Comment by Toby on February 2, 2019 at 10:40pm

Since being diagnosed with FFA, one of the 1st things I did was google harmful chemicals in skin care, make-up, and hair products.  I also found the EWG website and search that site for favorably rated cosmetics, soaps and conditioners. I also do not buy anything with SPF from any “Benz” derivitive. I ended up ordering things on line using several different companies.  As per the EWG website without Benz derivatives, I get eyebrow pencil,  lip gloss, blush and eye cream from Beauty Counter.  Mascara from Crunchi.  Some Shea moisture shampoo and conditioner and hair spray/ gel.  Nourish Organics facial cleanser and moisturizer (Target).  I have not really found a foundation that I like. I do not wear powder.

i used to be a person that would wear make-up every day. Now, I tell myself I will look better the longer I can keep some of my hair than wearing make-up for a day.

one of the wonderful women on this site shared an article about the SPF in skin care and cosmetics and ultraviolet filters including benzene in shampoos and conditioners as being the link between FFA and LPP.  My dermatologist said it is not proven that SPF causes this, but it is the leading thought of what causes it. 

I don’t think eliminating these chemicals will bring our lost hair back, but I have to do everything that may prevent my hair loss from getting worse and hopefully going in remission. To me, just having this disease tells my my body is sensitive to these chemicals that are in all these products.

best of luck!

Comment by Kandy15 on February 2, 2019 at 7:26pm

Donna and Toby, thanks for this valuable information.  I just reviewed the make up and hair products that I use and looked them up on the EWG.  Found out that my shampoo and conditioner have Benzoate so since it starts with Benz, I'm not going to use it anymore.  I use Cover Girl make-up and I couldn't really tell if it had SPF in it so I looked up some SPF free make-up.  I was wondering if you could tell me what foundation and/or powder make-up you use that is safe.  It looks like Almay may have one as well as Estee Lauder.  Also, what about coloring your hair?  I picked up something today from Whole Foods but haven't checked out the ingredients yet.

I appreciate the guidance. 

Comment by Donna on February 2, 2019 at 6:05pm

Toby - Honeyskin is a brand name. I found it on Amazon

Comment by Toby on February 2, 2019 at 4:48pm

Hello lovely ladies, I read this website pretty much daily but do not comment very often. How I can relate to each and every one of you and hope the best for all of us.  

I have gone gluten free, milk free and try sugar free. I have cheated on the sugar free and darned if the itching returns when I have sugar.  

I have given up the oxybenzone, avobenzone and octinoxate SPF products and urge anyone who has not done that to do so immediately.  Also to not use shampoo or conditioner with ultra violet filters or benzene or any ingedient with a “Benz” derivitive. Benezene kills coral reefs.  Why do we use it in shampoos, conditioners and body soaps?  For decades, I unfortunately used these ingredients in moisturizers, foundation, sunscreen, soap, body wash, shampoo and conditioner.  Wish I had been smart enough to not use products with these ingredients.  Where is the FDA when we know it kills coral reefs?  I think we should all contact our senators to push the FDA to investigate the use of these ingredients.

Donna, I have never heard of the Honeyskin shampoo and conditioner. Is Honeyskin a brand name?

My love and thoughts are with all of you as we journey through this.  I wish none of us had to go through this.

Comment by Donna on February 2, 2019 at 11:41am

I am feeling good about my hair right now. I haven’t noticed any hair loss recently (few months) . I have made sure I put nothing on my skin that has those 3 sunscreen ingredients. Oxybenzone, avobenzone & octinoxate. I’ve also started using Honeyskin shampoo & conditioner. (Love the feeling of my hair)  Fragrance, sulfate & paraben free. I wash my hair every other day. I use rogaine 5% for women everyday & clobestatol 2x week. Who knows how long this will last though.  It seems like at the middle -end of summer I start with more hair loss.   Then stabilizes the rest of the seasons.

Comment by Kandy15 on February 1, 2019 at 12:13pm

I am so thankful for the support and the ideas that I have gotten from this site.  I have felt so alone about this condition - there are no support groups in my area, so to find this site has been very comforting.  My hair stylist has been doing hair for 35 years and told me that she has never seen any of her clients with this condition.  She always expresses her condolences to me when I go to her because she sees the loss.  I used to love getting my hair colored and cut but now I dread it.  I feel like all of the other clients in the salon are staring at me but trying not to.  Ick!

I pray that someone, some way, some how will find a cure for this stupid FFA and LPP.  We all hate it and can't understand how in the world we have been targeted by it.  

I keep taking the hydroxychloroquine, follow the gluten, dairy and sugar free diet ( I have cheated a little with adding cream to my coffee and eating gluten free cookies that have some sugar in them ) apply aloe vera gel to my diseased hairline at the forehead in the morning and CBD oil at night.  I am determined to fight to keep what hair I have.  I also have a plan in place if/when the time comes for helper hair in the form of bonded hair. 

I am not on Facebook so I really appreciate this site.  I know that so many have gone onto the Facebook FFA support group which is wonderful because we all need to do what it takes to find the support that we need from one another.

Have a wonderful weekend everyone.  Big hugs to all.  

Comment by BubbaLu on February 1, 2019 at 10:23am

I often wonder if my FFA will burn out, and if so, could it be this year?  I would love to hear from someone whose FFA did burn out and what the symptoms were as it burned out.   However, those who have had this glorious event happen no longer need this site to give them guidance and/or hope.  

If my itchy hairline journey were  over I would probably go on my way and not check in here anymore.  

Comment by Afraid on February 1, 2019 at 9:20am

Thanks Plf for your insight and support x

Haha!  I thought of you all yesterday as I embarked on another self help/ denial/ magic wand/ distraction technique.... as I headed off to see an ‘acupuncturist’... by chance i’d overheard a colleague referring to her friend whose hair had started to ‘grow back’ following TCM intervention!! I have googled and of course there is no evidence that this rare(?!) type of alopecia responds to acupuncture (other types do...of course!) but well... what’s to lose ???  The progression to being able to sit in front of a complete stranger and say I have alopecia without breaking into sobs is surely something..

here’s hoping!!

Comment by Plf on January 29, 2019 at 5:15pm

Hi afraid, I'm with you.  I keep hoping that my FFA is going to burn out as they say happens!!  But I don't know if anyone on this site has actually said that this has happened to them!  I'm in the denial camp, trying not to constantly check out slowly receding frontal hair line. l applaud all you lovely ladies, appreciate your wonderful sense of humour dispite this horrible affliction...fingers crossed for a break through in treatment.

Comment by Afraid on January 29, 2019 at 5:07pm

Thanks for the reminder re carf website...I find reading info at different points throughout my hair loss journey helpful.  It’s strange though, despite everything I have come to know about this wretched condition and daily progression... I STILL stupidly think that my hair loss will stabilise soon and perhaps even grow back!! Just how ridiculous am I?!? 

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