Frontal Fibrosing Alopecia | Time for a wig?

[@Kathysvlogchannel]

Two years ago, I was diagnosed with FFA . I was not ready to accept it mentally because I was also dealing with skin cancer. I was not denying I had FFA, but I did not think it was necessary to stress about it or use steroids for treating it. I’m beginning to realize a wig is my best option, but I have no idea where to start. I’m documenting this journey and I’m hopeful my yt community will provide support and advice. Here is a link to my video the day I was diagnosed with FFA: kzbin.info/www/bejne/eIq3lYiZfdyFqtEsi=DwUj8qoReX2iOy91

[@Viktory5536]

You are beautiful as is. I honestly do not think anyone would notice had you not said anything. Of course you are intune with your own body but I feel you should not be concerned about this. I agree with you, I would NOT put anymore steroids into your body nor creame or any meds you absolutely do not need. Your hair looks better than the above average person that does not have any FFA or skin cancer or nor any body image compromising condition so try to focus less on that and more on living. Be blessed and prayers for improved health and continued remission.

[@Kathysvlogchannel]

@@Viktory5536 I very much appreciate your encouraging comment!!

[@bshows14]

Im also dealing with a scarring alopecia and they offered the same treatments to me. Steroid shots, antibiotics and immuno suppressents. I decided i wanted to treat naturally as i saw the same thing you said. Even those treating the condtion were still wearing wigs and toppers anyway. It is a devastating diagnosis as a women. Ive had long beautiful hair until this hideous disease decided to make an appearance.

[@Kathysvlogchannel]

@@bshows14 yes you can relate to my frustration. I did purchase a wig (cruise control by Raquel Welch) but it remains in the box still today. I may make a vlog trying to put it on if I’m brave enough.

[@MiMi-kx1vy]

I would have never known you have FFA if you had not posted this. You are quite lovely. Hang in there.

[@Kathysvlogchannel]

@@MiMi-kx1vy Thanks! So far I have not experienced anymore significant hair loss and I did purchase a wig, but I do not feel comfortable wearing it…yet since I have most of my hair on my head. I’ll be ready when I do need it. It is very close to my own hair color and style so hopefully it will be an easy transition.

[@randallbrowning617]

Hi Kathy, I am a wigmaster. I build stage, screen, and medical pieces. I have clients with FFA. Before investing in a full wig, I might suggest a small, monofilament base frontal that blends into your existing color and style. They can be attached daily, weekly, or longer with medical adhesive or to headbands for quick changes. A custom piece is a fraction of the cost and can be reshaped for extended use. Your hair is lovely. I would capitalize on what you have...

[@Kathysvlogchannel]

@@randallbrowning617 Thank you!! I very much appreciate your expertise about wigs and hair pieces. I just googled the term “monofilament base frontal” and it enlightened me to more information. Also a few wig shoppes in the St Louis area that might be of help for me to actually try some toppers on. I have ordered “bang clips” from amazon and they were immediately returned and looked ridiculous, lol

[@randallbrowning617]

@@Kathysvlogchannel A regular topper may sit too far back. Ask if they have any with a lace front as it can be placed closer to your original hairline. This may give you an idea of what a custom frontal might achieve. A custom frontal would fit only the area of hair loss, not over any of your existing hair. It usually addresses the forehead and temple area tapering down to the ear. A clear head wrap allows the client to mark the original hairline thus establishing a pattern for the base. Once the pattern is reinforced, it is cut out and placed in position for consideration.

[@Kathysvlogchannel]

@@randallbrowning617 oh this would be the answer to everything!

[@bshows14]

​@@KathysvlogchannelDid you find any shops in St Louis that were helpful? I'm also dealing with hair loss issues.

[@Kathysvlogchannel]

@@bshows14 no not yet; I did purchase a wig, but it does not exactly look “normal” on my head. It remains in the box today - sigh

[@origma99]

Hi Kathy, Im so sorry that you are now battling this. Your skin cancer journey really helped me, and I really appreciate that you took the time to share as a way of helping others. This is not fair because you have been through enough. I truly hope someone on youtube can provide help to you. Take care, Sue

[@Kathysvlogchannel]

@@origma99 Thank you Sue! Ya know, I learned a valuable lesson as a child from my mom…life is not fair. I suppose I always knew this - and I’ve also discovered that when we have Jesus, we also have His peace and Strength to get through whatever life brings. And - there is always someone else going through something too and it may even be much worse.

[@hollyavillella554]

Nice to meet you, Kathy. First, congratulations for concquering skin cancer! Secondly, your hair is lovely. I'm browsing hair loss vids and Googling the issue, reading as much as I can. I, too, am losing my hair. Seventeen years ago, I lost my hair to chemo. It didnt bother me too much because we were conquering cancer and everyone assured me my hair would grow back. My Mom had worn wigs for years and so I took the loss as an opportunity to buy "hair I liked " a wig! My hair always had a mind of its own, so the wigs were great fun and a morale and confidence booster. "My hair" never looked so great! And, the wig was actually less expensive than real hair maintenance! Yay! My real hair did regrow ~ at first it was very very curly then finally just regular. A few years ago I had a surgery and tremendous pain and stress and I lost about a third of my hair. I kind of joked saying it wasn't a bad thing bec my hair was so very thick. This year has been stressful and I am noticing alopecia circles on the sides and very thin top. I have been coping with loss of eyelashes and thinning eyebrows. I have Raynaud's and thought perhaps that was the cause. I really miss my eyelashes. I've never been handy applying false lashes. I think perhaps my might regrow once past a painful time calms. However, it's beyond styling! You'd think after having worn wigs previously I'd not have any angst. But, I am not indifferent to losing my hair. I might check in with my pcp to rule out any serious possible causes, but I'm not up to dermatology, injections in my head ~ no way! I have to get my mindset positively that wigs for starters will save me a ton of time and energy! Color matching is a bit challenging this time as my walnut brown hair is kind of ashy looking as grey and white weaves its way through my pate. I'm just in a convo with myself that once again I'm blessed not to be seriously ill, to live in a fairly gentle city, to have resources for wigs, and the opportunity to perhaps improve my appearance. Also, the wig models online really know how to make wig wearing look fun! You'll find your way. The important thing is to stay healthy and beautiful as you are! New subscriber. What a time we live in to make new friends all over the world! 🩷💐🙏🕊️

[@Kathysvlogchannel]

@@hollyavillella554 Hello Holly! I love your sharing and I’m sorry to hear you are and have experienced so much stress and hair loss due to it. I hate to know anyone has pain and/or stress on top of it. I will be adding you to my prayer list and I’m so glad to connect! I did order a wig by Envy called “Charlotte” but it has not yet arrived. I will vlog when it does.

[@hollyavillella554]

@@Kathysvlogchannel Thanks so much for your prayers! Looking forward to your next video! Bless you! 💕

[@JessHanson-yz8mr]

I too was recently diagnosed with FFA and I am only 40. I did steroids, oral antibiotics and finasteride now for 6 months and mine is only getting worst. Recently decided to go the root of topper vs trying other medications with worst side effects. A great company is Chiquel they have a You Tube channel too and their toppers/ wigs are amazing quality. Wish you all the best! Thanks for sharing. 💛

[@Kathysvlogchannel]

@@JessHanson-yz8mr I truly appreciate your input and sharing your experience with medications. I’m so sorry to hear the meds were not helping; as I feared the same. I will search for that brand. Again thanks so much!! Good luck to you as well!

[@rayhayden]

It is so different for women, and I get it, but health and well being - physical and mental - is vital. If you believe you are going to eventually have a wig, researching the options now is a great idea. Hopefully the process of selecting and finding solid options would also aid in making any transition more palatable as well. Continuing to send good vibes your way!

[@suzanahong8312]

you are so BRAVE !

[@RobertoMorales-jv2ns]

You look great!!!!!!

[@kitcat102]

Hi , I know and understand exactly how you feel. I’m 64 and was diagnosed around 12 years ago with FFA. I used some prescribed cream at the time but then decided just to try some natural products. I’ve recently been referred again, at my request, to our Dermatology dept at hospital and am currently using Dermovate lotion. I’m due to go back next week but can’t really see any change. I also use a Rosemary oil product around my hairline the night before I wash my hair. My hairline is about like yours now especially around my ears. I have a fringe but obviously concerned for the future. I’ve watched endless videos about toppers. I’m in the UK but in the US you have Uniwigs which always look encouraging! Anyway you’re not alone and your hair looks lovely and it’s really not noticeable x

[@Kathysvlogchannel]

@@kitcat102 your comment is so encouraging. It just helps not being alone and the fact that you have been diagnosed for 12 years and have not seen much a change actually gives me hope.. I really don’t want to treat this and I don’t want it to get worse either, but I am willing to do a topper or a wig when the time comes . Yesterday I watched so many wig videos. I became overwhelmed. I just really want to find a wig that matches my hair the way I wear it now and the same color.

[@stephanbrodhead7171]

You are beautiful. Dont worry about.....

[@RobertoMorales-jv2ns]

🙏🙏🙏

[@virginiav.1172]

You don't look like you are ready for a wig yet and your hair is lovely. I also suffer from this condition but have been discouraged by the treatments I read about. Just curious if your eyebrows fell out first? Mine did, although I just thought I was aging at the time.

[@Kathysvlogchannel]

@@virginiav.1172 yes my eyebrows and eyelashes were the first thing and I just assumed it was from aging. I used to try to get extensions and they would only last a week and then I finally gave up on having eyelashes so I wear fiber, lash mascara and a lot of heavy eyeliner and the best thing I ever did was get my eyebrows micro bladed because I have absolutely no eyebrow hair and on my arms also has completely diminished but all of that happened way before I was diagnosed with FFA or even considered that condition.

[@VickiSlate-f1w]

@@Kathysvlogchannel Same for me.

[@VickiSlate-f1w]

I had a long reply written but lost it I guess. Your hair looks healthy and the style is perfect for FFA. I too have this condition and am on no meds. I am trying to keep a cut and style that hides my hairline as long as possible. I feel your emotional pain, but I’ve tried hard to not let it consume me. I’ve watched a million KZbin videos on wigs and toppers. I’m not emotionally ready for that, and my hair is short and wavy…hard to deal with. Your hair would do well with a topper, but honestly no one would ever know your condition, which is such a blessing. God bless!

[@peacefulsleep7052]

Watched a young guy who used Saw Palmetto and swears it returned the growth, he also boosted gelatin in his diet. He also derma stamped and applied minoxidil. I've used Rosemary oil and it is working slowly.

[@Kathysvlogchannel]

@@peacefulsleep7052 thanks for this information!

[@Samantha_UniWigs]

Thanks so much for sharing Kathy! We can provide an alternative hair to let you try and review! How can we contact you?

[@Kathysvlogchannel]

@@Samantha_UniWigs You can send me an email at [e-mail]

[@Jokerjaxs]

You look lovely cut a fringe in that will help . You can also get some extension in your hair .

[@Kathysvlogchannel]

@@Jokerjaxs I decided to try a wig. I ordered Charlotte by Envy. I will make a video when I receive it in the mail.

[@Jokerjaxs]

@@Kathysvlogchannel honestly you look great stop worrying I think we notice more things about our selfs . I’m on the 13 day of that chemo cream I look a right state . Looks like your skin went back to normal so it gives me some faith thank you for sharing.

[@Jokerjaxs]

Try a hair growth subliminal on KZbin but you have to listen to it every day . Find one that you find it enjoyable to listen too .

[@Jokerjaxs]

You could try mircoblading the hairline or a tattooed hairline.

[@lana3533]

Вы очень красивая женщина! С волосами или без волос!

[@Kathysvlogchannel]

@@lana3533 need translation

[@annegray4067]

Its not vanity

[@Britt-MarieKarlsson-x3p]

Thanks Kathy for charing your story. I have the same condition and is truly grateful for your video. Even though we are many with FFA there is no one to talk to about it. 🩷

[@Kathysvlogchannel]

@@Britt-MarieKarlsson-x3p It is definitely helpful to talk about it!