FFA and wigs

[FabFitFifties]

I've had FFA for 8 years, since I was 46.I've lost about 2 inchs of my hair line/fringe, and some at temples too. I'm very lucky that I had a low hairline, and most people don't realise my fringe isn't really my fringe, until my hair is wet or it's windy. I now have a bob - I can no longer tie my hair up or have a short cut. Has anyone else started wearing wigs before they "had to". I was thinking of getting myself and other's used to me wearing one. It will be a shock to people, as ironically my hair is naturally very dark and shiney, and I still get lots of compliments, but time is running out. A bit of me likes the idea of taking charge of the situation. I thought of having a short dark style and maybe a lighter bob. Can anyone recommend suppliers/fitters?

Hello- have just seen your message as I'm searching for similar info. I have had FFA for a long time but progression was extremely slow until last March since when I have lost a lot of hair. I found a nice hairdresser who specialises in hair loss disguise - sigh- but am finding it increasingly difficult to manage my hair. Ironically am having to take so much care with it I get compliments all the time these days. Anyhow I have decided to start wearing toppers- which are sort of mini-wigs for the crown/fringe areas. I have a consultation this weekend & hope it will be a sort of bridge between my current situation of Trump-style confection involving entire cans of hairspray and wearing a full wig... sigh- its a very hard condition to deal with, physically and emotionally.

I have it at least 5 years.im finding it very hard to cope with the all over body itch. i can still cover it BUT will either wear a topper or wig before its actually time iykwim. i feel there must be lots out there with this and i havent noticed it.its a not a great situation as my hair was my best feature. im 49 and wIsh I didnt have it but couldbe something life threatening. i envy other peoples hair. we went to spain last yr on hols and i nearly died with the heat and itch so off to bavaria next week where the weather looks rubbish so amfeeling guilty regarding my poor kids only summer hol

Thankyou so much both of you for answering. I live in hope of burnout. I had no idea my horrendous prickling/itching was related! Even the dermatoligist I saw didn't put the 2 together! I was even treat for scabies! I'm now at a point where I can go weeks wirhout it. I've just had about 4 months itch free, and then it's back this week. Ironically my head isn't affected. It's a very lonely condition. Wishing you both burnout ❤️

Hello! I've had FFA for around 25 years. Still slowly progressing without much itch. I started wearing a full wig about 8 years ago. I had lost 2 inches then but was finding dealing with my poor quality hair impossible. Am very happy with my wig choices. I didn't go for a topper as very hard to match with my remaining hair's colour and texture.

I don’t have FFA but do have androgenetic alopecia and my hair is extremely thin with many parts of my scalp showing through. I wear wigs when out and about and it has given me my confidence back. I was so withdrawn before and hated when anyone stood behind me or was looking down at me etc. I went with synthetic as easier to look after and took me a few goes to find some that suit me. I have accepted my hairloss but still have bad days - I have been wearing wigs on and off for 10 years now. I attach a pic of my most recent one which I think looks really natural and is really lightweight and comfortable. Good luck with whatever you decide and try to find a local wig salon to try some on as there are many out there!!

This is all very new to me .. I never ever heard of FFA. I started experiencing loss of bodily hair including my eyebrows diminishing over 15 years ... I appear to have entered the peri-menopause about 13 yrs ago and had my first child - geriatric mum - and am experiencing the menopause! 2 years ago, I started showing signs of rheumatoid arthritis, developed a reaction to alcohol ... including my skin and started to notice my hair line was changing - thinning, receding, scaling .. and scarring. I have been falling apart!! I had an NHS MySkinDoctor assessment by photograph submission - suspected FFA with treatments recommended .. no positive results. Waited for the referral appointment with a NHS Consultant ... nothing!! I got impatient and went private only to have it firmly confirmed - it's FFA, scarring, permanent and will not hair will not grow back - it will get worse! I felt like I hit the floor! She wrote to my Doc recommending referral to a specialist ... and that he basal cell carcinoma should be removed .. I did that privately ..

I had my hair cut shorter (lucky I always have had a fringe but I cant wear it up and don't want to be seen when its windy weather ... I have shrunk into a shelf; spend ages treating my skin and making sure my hair sits properly.

Finally after 2 years I have seen the NHS Consultant .. by chance ..a cancellation! I jumped at it. I sat there bruised and stitched up from the carcinoma removal .. looking like a rabbit in the headlights. As well as levothyroxine and HRT patches, I am different medication, another steroid cream and a trial drug for 6 months.

There is no explanation as to why I have this .. it could be hormonal, stress-related, an immune system disorder where my body is attacking itself .. but its on the rise and I don't want it.

I am due to a photographic scan of my hairline to monitor it! God I miss my widows peak and yes I have seen some of the images on line ..

I don't feel I am me anymore .. I crumbled in a heap and cried. I have lost some of my spark and confidence .. I am afraid of what will come next but there is nothing else I can do ... or can I? I can't speak about it. I don't want to speak about it! There are no help groups in my area .. I just have to paint a face on and hide behind a smart suit and attempt to smile .. Sorry for this long post but its hard to accept this condition ... I don't know if anyone else has experienced any of this issues along with a FFA diagnosis and is undergoing treatment?

Please please dont turn in on yourself.like i think i have this condition but no one knows the pain/ stress i have over my hair. Similarly i dont know what other people have / battle in their lives. I used to love the mirror and took serious pride in my looks but not as much anymore which is sad as a woman. My consultant is really great thinks im nuts to think its all over. Says those photos online are rare. And those people werent caught in time. She reckons we can control this and get it to burn out. I feel in control with her help. She told me to go straight out and buy perfectil max 3 for 2 in boots . Im on finasteride
Doxycycline
And plaquenil.
Was out at weekend and my aunt in law wears a wig like it looks unreal. I sometimes think the strain of the continuous meds is hard !!! Like Longterm.so difficult.
I know in my heart no one realises my hair covers my bald tenples . My DH tells me he will tell me when its noticeable !! I rock great ear rings and love style so try and detract from my hair as much as possible. My heart goes out to you and my heart to me too !!! There are plenty with this and we dont have a clue that gives me strength
hugs

Me again
Im self employed and had a very stressful time with an employee which involved police. I NEVER have had stress like it and feel this was the trigger for me. Im still the same person . There are lots of facebook groups but when i joined you get alerts and its always in your feed which i found too much mentally. I use a brow kit from benefit and a mac eye brow filler that makes my brows look thin but there still. #sohardallthis.
Like if i crumble over this what life will i have. Thought I bawled ny eyes out at my first derm apt - 😔

Thanks Radyward! I read your messages at silly o'clock! I too am self employed. No HR backup for us then. I can only think this has been triggered by stress, stressful situations .. lockdown didn't help. Like you I am hoping this has been caught early enough to control it, slow it down .. firewall it. I have to take back control of me in 2024, get fit, spend time on my appearance and earrings! I am on Prednisolene for a few more days which was supposed to quell the inflammation of the follicles .. nope. 1/2 tab of Minoxidil and and Dutarsteride as well as a steroid cream (night before hair washing). I will try the Perfectil. In between and when my hair line looks agitated I rub in organic castor oil with ginger ... anti-inflammatory?Thank you so much for sharing. I will try not to crumble and try not to burst into tears. #sohardallthis agree!

Aw. Like when I went to her first i had scales like white debris we"ll say around the hair follicles and its stable now
The hair roots seem clear. Its totally crap but cancer is worse. Im 49 and think everything falls apart when you are nearly 50 !! #trynottodespair

Look up Dr Christian Tziotos ( my spelling might be off ) doing serious research into this. Based in Londo
When i was desperate for help i phoned his private practice and thought him reasonable in his fees. Altho i cant remenber now.
Hugs x

I agree, it's so hard but try not to turn inwards. I was diagnosed May '22 - since then, the best things for me have been to find a hairdresser who specialises in hair loss (some are qualifed in trichology so they've at least heard of FFA). They can help with hairstyles that mean you're not frightened to get out and don't spend the whole time worrying if people can see your scalp. Also microbladed eyebrows. And for itch/inflammation the prednisolone was the only thing that worked for me but they don't like to leave you on it for long. Antihistamines help a bit ,and also cbd oil on the sore/inflamed bits, but I'll be honest, is not a great look so def one for overnight. Eucerin scalp lotion works somewhat for me too and is not so greasy.

Thanks for the advice and insights .. I will see where I get with the prednisolone - only a few days left of those though. Turns out the carcinoma was low grade cancer - caught and all removed. I will try anything now including perfectil max. I bought some biotin shampoo n conditioner. At the moment I am busting my butt with work so I can take a well deserved break at Christmas! Will update on my hairline scan next week!!

So my hairline has been recorded and my next Apt with the consultant is not until May 2024. I had a reaction to the medication, came off it, went back on slowly. In the space of 6 weeks I see more receding of my hair line .. I have no nails - bitten off ... Are there any homeopathy remedies/treatments that can assist and work with the prescribed medication?