Hi,

I am having phototherapy treatments on my hairline and eyebrows and I am seeing improvement (inflammation/red follicles clearing and some hair growth).   I am seen by a local dermatologist whom I love.  She is an advocate for her patients.  It was difficult getting insurance approval. 

Last month I visited Mass General Hospital Dermatology H.A.I.R (Hair Academic Innovative Research Unit) which is in Boston to see if there was anything else I could be doing.  This unit is currently conducting clinical research on FFA.  Getting an appointment took one year.  I almost blew it off as I mentioned I'm happy with my doctor.

The doctor and research assistant confirmed my case with a physical exam of my scalp, lots of pictures of the affected areas, and an in depth questionnaire. 

The clinical research is ongoing, but I was given a list of chemicals that are to be avoided (ingredients in many beauty aids and hair products).  Just thought I would pass this on!

Methylcloroisothiazolinone (MCI/MI) preservative

Limonene

Linalool

Fragrance

Dodecyl Gallate

In hair color/dyes:

Ammonioum persulfate

Paraphenylenediamine 

"Avoid chemical sunscreens and moisturizers that contain avobenzone and octicysalate".  Instead use zinc oxide mineral based sunscreen products"  Highly recommended was Blue Lizard- SENSITIVE line.

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Replies to This Discussion

Oh, Gery. I so understand you! I'm having major scalp problems, too, due to developing dermatitis. My scalp is covered in red spots, flaky, and very itchy. I'm tired of going to the doctor. But you know, sulfur-based remedies have started to help me. Only one dermatologist was able to help me with my problem. He said I should stop using oxycisalates in shampoos and only buy products from one company, Ordinary. Of course, my facial routine changed as well. Unfortunately, all the products I use now to improve my scalp and face are very expensive. I don't even know what I'd do if I hadn't found the service https://hoopladoopla.com/category/beauty-personal-care which gives a lot of cashback to customers like me due to cooperation with famous brands.

Very interesting.  I've been avoiding methylcloroisothiazolinone and octicysalate for years as it was one of the key ingredients in sunscreen that I was most likely allergic too.  Sunscreens make me itchy (for over a week, scratch til you bleed kind of itchy) so I avoid them.  My dermatologist did a patch test and said I'm not allergic to sunscreens and I most likely have solar allergy (Lordy, I live in Australia).   I disagree, I've tried to wear sunscreen again (without sun exposure) and it was not pleasant.   Also can't wear fragrances they give me an itchy rash.  My issues with sunscreen and fragrances started when I was a young teenager and I my FAA didn't present until I was in my 30s.   I'll check out the Blue Lizard line. The people doing the research should join this website :)  

Geri, you said your getting some hair regrowth?  Is this proper hair or peach fuzz (soft stuff usually found on the face)?  With FAA the hair follicle dies and falls out so hair can't be regrown if there is no hair follicle.  Do you have a couple of different types of alopecia I wonder?   

Just to weigh in on the conversation suggesting that these chemicals my be responsible for hair loss.   I can only go by my own personal story and the clear winner for me is genetics.  I have FAA,  my mum has FAA and we suspect so did her mother and also her grandmother (correct me if I'd wrong mum).   Perhaps people with FAA (and those with it laying in wait ready to attack!) are more sensitive to these chemicals.   I'll be giving the list of chemicals to my daughter as her odds are not in her favour.  If there is any chance of even holding it off for longer it would be worth it.  She has just started using 'The Ordinary' skin care range (which is apparently really good for teenage skin breakouts).  Maybe some hair in those with FAA has been 'killed' off by the chemicals and the hair follicle remains so therefore phototherapy etc, can result in hair regrowth for 'chemically killed hair' but alas I do not believe that hair that has died due to FAA (death by immune system) can ever regrow.  I'll be asking my dermatologist next time to take a good look at my scalp to see if any hair follicles remain on the bald sections.  

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