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Comment by Kat on February 24, 2019 at 1:17pm

P.S.: 

hahaha, sorry - spellcheck and typing on the phone..!?

I meant ‘burden’ and ‘FFA’ - even though FFS would suit this illness quite accurately actually...!

Comment by Kat on February 24, 2019 at 1:05pm

Hi all, I hardly ever comment , but follow a lot of your posts and I am very thankful to know I am not alone with this birden of FFS and all the frustrating daily issues that seem to come with it...

I just wanted to say that I take Piriton Tablets for the itching and it really helps every time. I have tried other antihistamines, hut they all did not work or got me feeling really stressed... I spoke to my than Dermatologist, and he said its fine to take this when needed.

Further I am using the eyebrow marker from “KIKO Milan” which seems to last all day, and is super easy to use. I always buy 2, as the worry to not find one or one having dried up is so stressful... 

For the bold patch/very receeded hairline, I currently use a headband every day - people think I have some crazy obsession with this look I guess, haha!  Luckily I have a fair bit curly hair at the back, so it looks like I do it for fashion to people who “don’t know”. ;) 

I order them via Zizway (google it). The Top Knot ones and just have the top knot at then back. they are soft and stretchy and I can bare them. (I hate and have always hated hats and beanies and stuff like that) 

Anyways, I am sending you all strength & light with this horrid desease. 

Comment by illustr8r on February 24, 2019 at 12:48pm

@CurlyK Clobetasol really helped calm the itchiness. I also use Cortizone 10 for eczema along my hairline when the white shiny skin feels tight and itchy. I use CeraVe body lotion all over because it seems if my head is itchy the rest will follow. :(

Comment by PamW San Diego, CA, USA on February 24, 2019 at 10:40am

Curly K, Zyrtec helps me and Clobatesol foam. 

Comment by CurlyK on February 24, 2019 at 8:23am

Hi ladies! I am going through another round of itching all along my scalp line, down the sides of my face, and now down my neck. I have never used anything prescribed for that kind of itching before. What do you find works best for this?

Comment by Minter on February 22, 2019 at 9:45am

I know some of you use Ananda Hemp oil - just saw they are having a 15% off sale on everything until March 1!  :-)

 I'd post the link but not able to do it ;-( 

Comment by BubbaLu on February 20, 2019 at 9:59am

Debs,

it is always good to hear from ladies who have been going through this for a long time.  I have been diagnosed just over a year and I take plaquenil.   My hairline is itchy and scaly and I have some new hair growth that is a curlier texture than the rest of my hair.  I have hope that the plaquenil is fighting back.   Is this how your hairline recess or do you think it could be new growth?  Also I am using CBD oil on the hairline.  It may just be the grape seed oil base, but it is soothing.

i found a really good eye brow product by Anstasia Beverly Hills, Inc. it is a pomade you apply with a brush.   I find it easy to use and it is waterproof so it stays on very well and it comes in different colors.  I use the blonde - it has plenty of pigment, really looks light brown.  

Comment by Afraid on February 20, 2019 at 7:55am

Thanks sooooo much Debs for your comment.  It does feel in the beginning as if ‘normal’ life will end and the only way forward is to run away or become a recluse...quite a difficult proposition when I need to work and I’m a sociable being! 

Perspectives on ‘how to’ keep going from others with the same condition(s) is so supportive.  Thank you. 

Comment by Plf on February 20, 2019 at 6:18am

Wow Deb's, fantastic input, I live in Australia..so a lot of the resources don't apply, really appreciate your positive attitude, yes just got to realise we are not alone and we r alive to tell our stories, go girl you are inspiring

Comment by Debs on February 20, 2019 at 6:12am

Hi ladies 

I have not posted for a few years, I have been living with FFA for nearly 8 years now.

 I used medication for just over a year - hydroxychloroquine sulphate and for a couple of months doxycycline antibiotics.  The hydroxychloroquine sulphate did slow the hair loss down but I felt it was creating a “death by a thousand cuts” scenario where it was prolonging the time it takes for the FFA to burn out.  The doxycycline upset my tummy, so did a few other tetracyclines I tried.  After a year of meds I decided to stop.  I am an otherwise healthy woman and for me the possible side effects of any drug isn’t worth the limited payoff on my hair loss but we must all do what feels right for us.

I wore  a wig to work because my appearance had to be very smart in the corporate world.  In my private life I wear a head band.  

I have my brows defined with semi permanent makeup.  

Having been diagnosed 8 years ago, FFA is now the new normal.  I have lost about 2 inches from my front hairline.  It is continues ...  I don’t think about it obsessively as I did in that first year of diagnosis and just get on with life.  

I was diagnosed with an over active thyroid (Graves disease) in January 2017.  I took anti thyroid meds for 4 months and have been OK since then.  This is an autoimmune condition.  

Anyone recently diagnosed I would say to “hit the ground running” sort your appearance out ASAP, if your eyebrows/lashes are thinning try latisse or get semi permanent makeup.  If you struggle to style yourself change up your hairstyle with a fringe (bangs for you ladies in the USA), synthetic wigs that retail around £100 - £300 look very natural, bizarrely often more natural than human hair wigs because they are not as dense and they hold their style after washing.  Brands -Amore, Ellen Wille, Raquel Welsh, Natural Image, Jon Renau all do super synthetic wigs in a variety of colours and hair textures.

Headbands and buffs are great ways to style yourself for the gym, yoga and for smart casual wear. 

For any ladies in the UK that usually go to Belinda Hayle for their semi permanent makeup, unfortunately she is no longer running her wonderful clinic but a couple of years ago one of her trainees did my colour boost, Rebecca was extremely gentle and did an excellent job.  I will use Rebecca’s clinic in future.  Her details are Rebecca Chase in Camberley, Surrey. 

A couple of years ago I gave a DNA sample to Guy’s hospital in London where they are doing research into FFA, which is referred to as an epidemic because it is now so common.  Like most disease there is a genetic element to this.  There is something in our DNA that makes us susceptible to this condition but the trigger is unknown.  Since Kossard first diagnosed FFA in 1994 (FFA is also knows as Kossard’s syndrome) it makes sense the trigger is something in our modern world (man made).  

Anyone struggling psychologically with their diagnosis I found it helpful to attend a few meetings in the UK run by Alopecia UK.  I am sure there are similar support groups in other countries.  I also get together a couple of times a year, through the generous hospitality of another lady with FFA, with several ladies in the UK to catch up.

Sending a big hug out to you all... 

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