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Comment by Minter on August 13, 2018 at 8:11am

Sad in Chicago, yes haha- wearing a wig/helper hair means the silver lining is that your hair always looks awesome!  

I wish I could wear one all the time, as I would love to have a full head of beautiful hair, sigh. But I know I can't, I don't even like wearing a hat or anything on my head, it just drives me bonkers, which still makes me wonder why I went through the expense and time of trying the intralace last winter :-/  all the time knowing that it would send me up the wall having it on my head 24/7, anyway- saying that, I do think it is great and good for women that want and can do it  and I also agree wholeheartedly with you about getting off the meds, eat healthy, exercise, and yes, find a Great hairdresser, that is the best we can do for ourselves for dealing with Stupid FFA.  

Comment by Sad in chicago on August 12, 2018 at 10:00am

Ladies...as I said in many comments ago, eventually wigs are where it is at for me. I have been managing this hideous state of events for over 6 years now. Started with clip in toppers, graduated to larger ones that taped in front, went to molded that worked and taped around my ears, but as disease progressed found most comfort in wigs. Now I have three that all look pretty similar, same color, same material blend of human and synthetic and I find I am the most confident and comfortable. Admittedly summer and heat is not optimal and often requires a true grit of my teeth while I am perspiring but it is not insurmountable. Here is the thing:  you need to find a wonderful hairdresser who specializes in hair pieces. Work together to find what is right for you. Yes, expensive but pretty much only once a year for replacement if necessary. And now you are not spending other money on usual Hair management, such as color, cut, etc.   Get off the meds, they won’t help, know this is where you are headed, and feel better. I exercise again, take long healthful walks, hang out by the pool, sleep in an older one when my grandchildren or guests are here and am just dealing as best I can. And the best thing is when I run into people they cannot believe how wonderful I look and have aged!  Silver lining!

Comment by Minter on August 12, 2018 at 9:41am

@Meme, I think what you have done is indeed liberating, I've pretty much come to the same conclusion that when it gets to the point where I can't hide my hair loss anymore that I would do the same, shave my head and wear wigs when wanted and needed and to know that someone else has done it makes me feel that much more comfortable in my decision.  

I know that I wouldn't be able to wear "helper hair" full time as I get so overheated so easily and as a result I sweat, a lot, like dripping down my face sweat and to have something on the top of my head to add to it would probably drive me mad! Sometimes I think of Samantha from Sex in the City when she was going through the chemo and wearing all sorts of different wild wigs, that is how I want to be! (I probably wouldn't  be that brave, but I will try)  Thank you Meme, for sharing.  

Comment by Afraid on August 12, 2018 at 2:09am

Hi Everyone 

thanks for ongoing support and sharing.

curlyK you are an inspiration.  Your hair looks amazing and it does seem to reflect in your mood and attitude to this condition.  I wonder can I ask does your hair need to be shaved to allow piece to be glued to your scalp?  Do you know if you can have pieces attached to sides?  My sides are almost non existent - add large unattractive ears which protrude slightly it’s not going to be a good look.  

Half baked. My diagnosis and perhaps contributing  factors (as much as we can assume) are very similar to yours so I’m interested to hear your recent dermatologist has suggested reducing medication to minimum level... where do you apply the cream & how often? I’m still taking hydroxychloroquine which I know you decided not to take and given it hasn’t made a difference I will probably stop soon.   I still can’t move towards an acceptance and perhaps never will.  I did buy a wig a few months ago but it is completely hideous.  I too am worried about the heat as we’ve had an unusually hot summer in the UK and I’m heading to Europe next week....travel was my passion...now I wonder if the heat will make it worse?  &Air con seems to irritate my scalp. Will it speed up hair loss?? So many unknowns.  I try to enjoy every single day knowing worse is to come and I still hope beyond hope it just stops before it’s too late.

Thinking of everyone   

Comment by Bloomingdalekid on August 10, 2018 at 8:35pm

Thanks CurlyK!  The plan right now is to use the medical grade glue to attach to my forehead, as that’s where my hair has receded about 2 inches..... and then the crimps to hold the rest of it on.  I hope mine looks a beautiful as yours!!!!!!  Thank you for the information!  

Comment by CurlyK on August 10, 2018 at 8:24pm

My piece is attached to my scalp using medical grade glue. Like yours, it comes off every 5 weeks, gets cleaned and reattached. I sleep, swim, shower with it. Wash it like washing normal hair. I’m super happy with mine. If anyone is searching for this option try googling “bonded hair piece”. 

Comment by Liverette on August 10, 2018 at 7:47pm

Bloomingdalekid, I recently joined this site because I have FFA (not officially diagnosed), but both my temples have lost most of the hair. I live in Los Angeles and wanted to ask you if you know a specialist in Southern CA that treats FFA. And also will be looking into a hair piece and don’t know where to start.

Comment by Bloomingdalekid on August 10, 2018 at 7:24pm

CurlyK, is your hair a silicone cap or a lace topper?  I have opted for the lace topper with 12” cascading hair that will blend in with the hair that I still have.  They took a mold of my head so that it would fit perfectly flat to my head and then they attach it with metal crimps, much like extensions use.  It’s a 24/7 piece that needs to be adjusted every 5 or 6 weeks due to hair growth.  I’m curious to know what others are using.  I looked at Follea, but their wigs are truly wigs and not a 24/7 option.  Thanks for any insight you might be able to share.  

Comment by CurlyK on August 10, 2018 at 6:42pm

Yeah, it’s hot here in florida this time of year. If I’m outside long periods of time it’s somehwat annoying but honestly we live in the a/c mostly. Hey, having hair is worth the price of being warm. 

Comment by Halfbakedwho on August 10, 2018 at 3:46pm

Hi everyone

I went to see my original specialist in Paris - she changed my meds to only Bethamesone (spelling) - and said the Minoxidil is just to activate the hair follicles that might still be more or less alive. No more Clobestasol... but again nothing does anything so ... whatever. I put the stuff on to feel like I’m doing something. 

I was travelling in eastern Europe - it was sooooo hot there- and it seemed to me that the heat couldn’t be good for my scalp, but who knows? Thoughts? 

I can feel the sensitive-numb area extends further up the top of my head. The doctor also found a patch at the very crown of my head. 

What are your thoughts about wearing hair in this heat? Is it very uncomfortable? We don’t have much A/C here. I hope I have another year or two before I go this route. 

Curly K you look adorable, and I’d love your input. 

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