Comment

Comment by illustr8r on January 4, 2022 at 10:08pm

Hi CurlyK and Mel-

I’m trying to find Louise’s post too!

Comment by CurlyK on January 4, 2022 at 9:33pm

Hi Melanie. I haven’t been on here is a long time but I received the same email. I can’t find her or that post on here either…

Comment by Mel on January 4, 2022 at 7:55pm

Hi there. I have not been on here in years, but I just saw a comment come through from Louise, who seems to be struggling. BUT, I don't know how to find that thread. :-(

Anyone know how?

Thanks!

Melanie

Comment by Finn on June 2, 2021 at 10:04am

Hi

I response to Toby I can attest that using Vanicream's Daily  Mosturizer, and their sunscreen  ( can't remember the name but it is a broad spectrum) and also the same company's shampoo called Fresh and Clear,  ( I use the medicated one) has been HUGE.   It's made by the Mayo Clinic and has zero allergens.. I guess that before using them was part of my problem because I have used these products exclusively for a year now in conjunction with being on Hydroxycloroquine 200mg once a day which I started a year ago also.  I have been on Finasteride for 4 years now - I hadn't really noticed any great shakes from using this to be honest  but don't want to risk stopping it.  I might though because I think it makes your sex drive like zero.  I have FFA and Female Pattern Baldness combined ( oh joy oh joy ) .  But I have to say that this past year ( in a pandemic I might add ) my hair has somewhat grown in!!!!!! , is much thicker and I don't even think about the thin areas for days at a time.  I find it looks best a day or two after washing it as it thickens up but I doubt anyone would notice anymore that I have thin areas.  And they certainly would have a year ago.  Hope this helps someone out there.. Drs. say I am a success story .. Ha.. Oh- I use minoxidil religiously twice a day ( the 5 %).  

Comment by Toby on June 1, 2021 at 3:44am

Hi ladies,  so sorry Lu, I feel your words,  my FFA symptoms increase when I am under stress. Is there any way you can lessen stress?

A doctor at Massachusetts General found in a study that 76% of patients with FFA and LPP were allergic to ingredients in hair products and facial moisturizers and personal care products.  That’s huge.

 Fragrance, gallates, Linalool, methylchloroisothiazolinone, MCI/MI, were indicated as some of the ingredients that patients were allergic to.  The doctor found that without changing anything else in the treatment plan, eliminating the allergen for 3 months resulted in 59% having decreased scalp itch and 70% had decreased scalp redness.  The doctor recommended patch testing to determine what personal care products we may be allergic to.  There were more chemicals than I listed but the chemicals I listed had larger percentages of patients being allergic to that chemical. The doctor said avoiding the allergen greatly lessened the FFA symptoms but did not cure FFA.

Another thing I find interesting is that some products contain formaldehyde releases such as bromopol, DMDM hydantoin, quaternium-15, diazolidinyl urea polyoxymethylene urea, and sodium hydroxymethylglycinate.  We know with FFA our stem cells in our hair follicles are dying so our hair loss is permanent. So why are we washing our hair with formaldehyde?

I will try to find the article and post the link.

Best to all you lovely ladies. I miss the activity on this site.

Comment by Lu on June 1, 2021 at 2:48am

Hi Ladies, it’s been a while ... thankfully my FFA had been relatively stable for the the last 1.5 years. So much so that my Dr started discussing transplant options ... BUT .. over the last month I have had a massive shedding episode. I’m devastated! I can see where the hair has receded behind my ears. It’s looking sparse & wirey & crazy witch like. It’s horrible!! Thickness all over is down now at least 50%. I’ve got a scraggy, thin little pony tail where it used to be thick & lush. I don’t see my Dr again till August- I don’t know I can wait that long for help although I know there’s nothing she dan do :(

Thanks for listening 

Comment by AnnieMay on April 13, 2021 at 11:07am

Hi sammi,

This group has been pretty quiet lately. I wish I had answers for you. I would like to get the same advice!

Ann

Comment by sammi on April 3, 2021 at 4:05pm

Hi, I was wondering if anyone with FFA had any success with hair extensions or Lucinda Ellery interlace system? Looking into both

options as my daughters wedding is coming up and would like to make fringe and sides look fuller. The interlace system seems a big step and very expensive. Any advice would be greatly appreciated.

Comment by Dyners on February 28, 2021 at 1:51pm

hi CurlyK,

Wow I think that style looks really great on you! 

I haven’t been on here in a while, but nice to read through all the comments. 

Thanks so much for sharing.

Comment by CurlyK on February 6, 2021 at 1:27pm

Trying a new bonded hair piece. One with a little more sass!

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