Replies to This Discussion

Permalink Reply by Eve on February 26, 2015 at 5:06pm

Wow...they look great.  I'm new to the group.  I have eyebrows but hairline is getting quite bad.  Looking forward to learning a lot here.

Permalink Reply by Anne Louise on February 25, 2015 at 10:31pm

Wow Katy they look amazing! Thank you for sharing your pics. I had read an article recently about eyebrow transplants for women who want to look like celebreties...there is the Megan Fox look or Angelina brows. Price tag was $8000. It made me feel validated in my grief over something as seemingly innocuous as eyebrow loss. I used to have thick dark brows and now have absolutely nothing. I am pretty content with my tattoo for the moment but it is encouraging to see another option available.

Permalink Reply by Katy M. on February 25, 2015 at 11:49pm

losing my brows was more traumatic for me than I think hair loss on my scalp.  wigs seem more plausible than any eyebrow solutions, especially if you like to swim or exercise.  I feel so much better at the beach and gym now- not to mention work and dating and all other social situations.  

It was not an easy trigger to pull financially- but to get my life back...totally worth it. 

Permalink Reply by sallylwess on February 26, 2015 at 5:08pm

This comment abut the celebrities getting eye brow transplants is very interesting.  Like you Anne Louse, I also had very dark brows that I really liked.  My eyebrows disappeared literally overnight.  It was devastating.  I don't know if it is worth the expense to get a transplant.  I may have to think about that.

Permalink Reply by Sas Holland on February 27, 2015 at 3:25am

Katy, that looks really good, those eyebrows!!

Jess, wow how exiting that you are getting the stemcell transplant done in London at the HASCI. Did they also tell you that you have to start using a heavy dosis of Cyclosporine before and after the transplant? That was their demand with FFA patients they told me in Amsterdam, otherwise they won't do it.
That is the reason I backed off for the moment, because I don't want to use that medicin ( yet). And my FFA at my hairline is not so bad yet. My eyebrows are tattooed, which is perfect for me now.
I am trying a diet now, but perhaps I will have the sten cell transplant for my hairline with the cyclosporine later.

Permalink Reply by Dina on February 27, 2015 at 5:45pm

Happy to hear you have had some success with your alopecia.  I guess I am in a different class - I reject medications for this.  I just can't see putting my body through the side effects etc. for hair.  I am more of a holistic person and if I don't have to take medications, I won't.   I have never had an issue with the hair loss at all.  When I tell people that,  they rarely believe me, but I really don't give this disease a second thought.  I wear beautiful human hair wigs, apply my brows with a stencil (which I get stopped all the time by women on who does my brows).  I take issue with you thinking you added quality of life because of hair.  I am truly in awe of people who put so much reliance on hair.  I will never forget going to chemo with my mom - the women were more concerned about their hair falling out than the possibility of dying from cancer - it was so sad that so much of their confidence and self-worth was reliant on what is on top of their head.  I shared my alopecia story with some there and they were actually comforted by seeing me calm, collected and looking great I might add.  I won't chase treatments- I have found that the growth is short lived and you have to continually chase new treatments, worry about side effects, not to mention spending time in drs. offices.  Just my opinion and my personal experience but the last part of your post made me comment.  Wishing you of course all the best in your journey with this disease.  As I always say, I have alopecia but it never has had me. :)

Permalink Reply by Katy M. on February 27, 2015 at 7:01pm

You seem very proud of yourself for not pursuing treatment options.  I have no idea why you feel the need to lecture a grown woman on her treatment choices.  I will not defend my treatment options to you or anyone.  

I thought this was a forum for sharing treatment options- not judging people.  Wow!  Just Wow.   You are kind of an asshole.

Permalink Reply by sallylwess on February 27, 2015 at 8:37pm

Dina, I'm not quite sure what you are trying to prove with this comment.  I guess you truly are in a different class.  Your comment came across to me as being  quite classless.  Your comment to Katy M. and to all of us who suffer from FFA and other forms of alopecia was insensitive at best.  

I will not have my feelings dismissed by another's smug comments.  I am a woman who will turn 70 tomorrow.  My self-worth is not in my physical appearance, nor is my confidence based in how I look, yet I have suffered immeasurably from the hair loss I have experienced from FFA.  I continue to suffer from this emotionally scarring disease.  Don't judge me for my reaction to a disease that took away something that was very important to me: my hair.  Yes, there are many diseases much worse than FFA, but that does not mean that those of us whom have FFA do not suffer.  

I guess I would believe you more when you say that this disease has not "had you" if you didn't stencil in your eyebrows and didn't buy human hair wigs.  Let's face it.  Human hair wigs are very expensive.  I frankly can't even afford one, and it appears you have more than one.  So don't tell me that what is on top of your head does not build your self confidence or your self worth.  If those statements were true, I would think you would shun the wigs and eye brow stencils and be completely, 100% holistic and natural.  

It has been my experience that the natural look when one has FFA is not attractive.  It takes a lot of confidence to go in public with a hairline that is seven inches from where the eyebrows used to be.  I know this, because sometimes I just can't bear to put on my cheap, synthetic wig because my scalp itches too much.  I go out anyway, but I am not that comfortable when I see people staring at me.  I once had folks ask me who cut my beautiful hair.  Now, I look very odd.  That hurts.  

I hope you have enough class to apologize to Katy M and to the rest of us for your insensitive and smug remarks. We once thought of this place as a safe place to share our trials   

Permalink Reply by Sas Holland on February 28, 2015 at 1:36am

Hi, I just wat to say that I didn' t read Dina's comment as a lecture at all. I think she was just trying to give us another positive way of looking at it by sharing her journey to cheer us up.
No one needs to defend themself here fore the choices she makes, we all choose a different path in which we believe and we all share this here. I find it very interesting to hear how everybody is coping with this, wheter it's with medicin treatments, meditation, no medication, diets, transplants etc.
Wish you all luck with your journey and hope we all keep sharing this!

Permalink Reply by Lo on June 26, 2015 at 3:34pm

HI, Katy... Just wondering if you could give an update... Is your hairloss still slowing down/halting?  Your post above gave some hope for this diagnosis - just wondering if you are still experiencing hairloss with the plaquenil and shots - or if you've seen it slow.  And by the way - your hair cut in that photo is adorable. Are you still able to "wear" your natural hair?

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