Comment

Comment by Kandy15 on January 29, 2019 at 12:25pm

Thanks so much for directing me to the CARF website.  I feel so much better as I read about the helper hair ideas and even ordered some concealer from Derm Match.  I still have plenty of hair - just not where I need it in the front so I am excited to have options that I didn't know existed.  I wish I had joined this group 3 years ago but I'm here now and I appreciate you all very much.

Comment by Wyobalance on January 28, 2019 at 4:15pm

Check out the CARF website.  There are options available for many of us so that we don't need to fear the wind.  CARF will be adding more options in the future.   http://www.carfintl.org/

Comment by Kandy15 on January 28, 2019 at 1:59pm

Halfbakedwho,  I read the article you attached and I guess it would make sense if I were a doctor but it was very over my head.  I was diagnosed with LPP 3 years ago when I had a rash all around my hairline.  The doc did the biopsy and that's what it came back as.  I was put on doxy and clobetesol but lost my hair along the sides of my head from my temples to my ears anyway.  I am one of the ones that hates when the wind blows my hair back for all to see the baldness.  When it's a calm day I can keep it hidden.  My front hairline is now being attacked right at my forehead.  I kind of always saw the thinning there but never had the rash until this past November.  The dermatologist told me I have FFA now which is the same as LPP.  I honestly don't know if any of these derms know what they are talking about or how to even direct us to something that could help.  That's another reason I am so thankful for his site because we can all bounce ideas off of one another and see what we are all doing to try to have some sort of success in a particular treatment.  

Erika B, I looked at your pictures and the hair loss comparison is encouraging.  Please keep us posted as to how it is going with your treatments.  

Big hugs to all.

Comment by Afraid on January 28, 2019 at 1:22am

Ps hair Kiss (=hair loss) my typo, but this website is so cumbersome !! 

Comment by Afraid on January 28, 2019 at 1:19am

Oh it must have been a bad hair weekend all round.  I no longer know what to write... apart from thank you all for ‘being’ there.  My sides perilously close to my ‘unattractive’ ears now.  It’s like life carries on in but hair Kiss is fast forward motion.  Boo flipping hoo!  I try so hard to stay positive about my hair and try to be grateful I at least still have some.  Helper hair keeps me going on one level but why oh why?!?  Anyway this is the best it’s going to be....

Did you know the 11th hair loss research congress takes place in Barcelona this year (April) ?  I recognised most of the global list of speakers in the world of dermatology from my constant internet research.  I am wondering about applying to attend??  Imagine... I could be ‘the real life’ example of this awful condition...haha!

Oh for some magic solutions.....  take care everyone  

Comment by PamW San Diego, CA, USA on January 27, 2019 at 4:05pm

Annie May, my eyebrows are tattooed because once you have tattoos, you cannot micro blade.  However, she did hair strokes.  

I asked her what to call what she did to my scalp, and she said it is medical grade tattooing.  She used two methods; pixelating and hair strokes.  I was also worried about more damage, but the areas where she worked haven’t had hair for years.  If I push the hair up or behind my ears, you just see brown, not bald.  She said bald men do it all the time.  

Comment by Halfbakedwho on January 27, 2019 at 3:58pm

https://reader.elsevier.com/reader/sd/pii/S2352647518300704?token=A...

I hope my link works to the article cited on FB. 

It distinguishes LLP from simple FFA - and I *still* can't figure out which I have - it emphasizes that if I have FFA only, I should have lost my eyebrows, which I haven't. However, if I had LLP, I'd have patchy hair loss, which I don't. As I look at my forearms right now, they are probably less covered in blond hair than they used to be. So I guess I'm more in line with FFA. 

Erika - I am impressed with your light therapy. I don't have the money to purchase one of those things - the only thing I saw offered here is downtown and you have to pay for the sessions, and I don't see myself going down there every day...

Sooo... all this to say that it's frustrating to feel like I'm not able to get all the treatment I'd like for this problem (though I'm sure I'm far from the only one in this situation), and also feeling ambivalent and kind of resentful about having to do *any$ damn thing at all... because I SHOULDN'T BE LOSING MY DAMN HAIR. Ouf glad I got that out ; ). 

Have a decent week, and keep your hair on your head. I'm certainly not - the whole house has curly strands in all its corners. Like a curly hairy nest. Lovely image. 

Comment by AnnieMay on January 27, 2019 at 3:56pm

PamW- is it tattooing or microblading? I'm going to ask about it on Fri when I go in for my eyebrows. I would consider doing it along my temples but also possibly in front of my ears. I worry it could cause more loss though

Comment by PamW San Diego, CA, USA on January 27, 2019 at 12:38pm

Last week I had my eyebrows redone.  I visited a new cosmetic tattooist who works out of a plastic surgeon’s office.  The fee was double what I have been paying the last few years, but I am hoping that it will last longer than the 6 to 8 months I experienced previously. I showed her my scalp, and we decided on medical grade tattooing to fill in the bald areas along my temples.  I am hoping that this will allow me to pull my hair back in a clip and not dread the windy days.  She thinks it will take 2 to 3 visits to achieve the results I want.  I’ll keep you posted.  

Comment by AnnieMay on January 27, 2019 at 12:32pm

Hi ladies, I'm having a rough day too. It's impossible for me not to feel down when I see other women my age who don't have to deal with this. They have no idea how lucky they are. I've always been a positive take charge confidant healthy person but it's so discouraging to think about how different I look and feel now. I try to forget about it but every time I see myself in the mirror I want to cry. 

For me my progressive receding hairline is only part of my misery. It's hard enough getting older but I feel like I've also aged dramatically. I miss my eyebrows SO much, I miss my smooth skin, I hate that I now have more and more thinning on the top of my head so in the light my shiny white scalp is on full display. . .I feel so naked and exposed.

For so many of you helper hair is a great option and a light at the end of the tunnel but my scalp and forehead are so sensitive that I can't imagine how I would ever be able to handle that? I don't know what I'll do when I get to that point but it makes me frightened and anxious.

I have some wonderful group vacations coming up but I'm already a mess thinking about how I will handle the inevitable windy days around everyone. On one of the trips I'll be with my sister who is one of those ladies we look at with envy. I'll try to do everything I can with makeup, powders, hats, etc but it doesn't change the constant fear that I will be exposed on a windy day and they'll see how ugly I really am. It's awful what this condition can do to a person.

I'm going to see my dermatologist this week but I'm not sure why because there don't seem the answers we are all desperate to hear but I have to do something.

And Fri I'm going back to have my eyebrows microbaded again. I had some scarring last time so I dread it. But I'm hopeful it will give me back a little of my face again.

I read your thoughts and think about you all everyday. As Kandy15 said I am so thankful to have a place to put down my thoughts once in awhile without being judged. 

Onward for now. Thanks for listening. I wish I could give you all a huge hug!

 

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