Replies to This Discussion

Permalink Reply by Tina S on March 4, 2019 at 7:45pm

Thank you for your kind words, Sandy!

It's so interesting to me that your FFA was in remission for approximately five years before flaring up again. I, too, have recently experienced the "tingling and itching" sensation along with noticing a few stray hairs here and there. I have an appointment with my dermatologist tomorrow, and feel certain that she will confirm my FFA has returned.

I also am a bit skeptical about the effectiveness of the various medical treatments for FFA and have considered wearing a wig when the time is right. Would you be open to sharing where you get your wigs? Do you prefer custom wigs?

I wish you all the best with your current FFA flare up. Thank you so much for sharing your experience!

Tina

Permalink Reply by Tina S on March 5, 2019 at 6:20am

Thank you so much, Sandy, for the information on wigs and for letting me know about wigsuppport.com. I like the way you gradually approached wearing a wig as part of your life.

There is a salon in town that caters to breast cancer patients and sells wigs, along with other mastectomy items, etc. I did visit the salon when I thought I might need chemo, so maybe that would be a good place to start my wig search when the time comes.

Can I ask one more question? Did you cut your hair very short when you decided to wear a wig? Was your biological hair affected in any way by your decision to wear wigs on a daily basis? I guess that's two questions! Please accept my apologies if it's too personal...

Thanks for your help, Sandy!

Tina

Permalink Reply by Tina S on March 5, 2019 at 6:42pm

Sandy, I so appreciate the information you are willing to share. The reasons behind your decision to forgo treatment and opt for a wig make perfect sense to me. I understand why you were dissatisfied with a topper. I, too, color my hair and had those same concerns about the topper blending in with my color treated hair.

I went to my dermatologist today and got steroid injections in my scalp. She said my hair follicles were very inflamed, so a FFA flare up is confirmed. I will wait to see how much my hairline recedes before making a decision as to whether wearing a wig is necessary, but I truly appreciate all the valuable information you shared!

Thank you so much for everything!

Tina

Permalink Reply by illustr8r on March 5, 2019 at 10:11pm

@SandyPA Thank you for the insights to wearing a wig and the name of the wig support group. I have a pixie cut and I’m doing my best to hang in there but I know wigs are in my future. I’ve been fairly stable since my diagnosis a year or two ago but the hair I found in the shower this weekend was disheartening. I’m losing my widows peak and my left temple is shockingly thin. I haven’t had a crying session in a long while but yesterday I was inconsolable. Today, better, but I’m having a hard time overcoming the sadness. I looked at wig sites today and I’m happy to see hairstyles that imitate the style I would have if my hair wasn’t disappearing. That made me feel a little better along with your great attitude about wigs. Thank you!

Permalink Reply by Tina S on March 6, 2019 at 6:15am

Understood, Sandy! I agree that the mourning process is the same as when you lose a loved one. I think we are mourning the loss of the life/lifestyle we expected and have to learn to accept our "new normal."

You seem to have made the transition beautifully. I know it didn't happen overnight for you, but you have inspired me to be a little more accepting.Thank you!

I browsed a bit on Wigs.com last night and found the reviews for my favorite wigs to be all over the place ... the same wig receiving five stars from one reviewer and one star from another! Have you found a favorite brand that is reliable? Would appreciate a recommendation...

Tina

Permalink Reply by HeatherG on April 19, 2019 at 1:01am

Thank you, so much, for sharing fellow warriors: Tina, Sandy, and illustr8r!

I have FFA and have list my widow’s peak, have had ongoing injections, and am thinking that I need to psychologically get prepared for wigsupport.com.

This is my first forum/support group experience...I have felt so emotionally drained and preoccupied with this dark and mysterious FFA that I’ve had gradually going on for years, but just recently diagnosed with (finally!) I’ve only been treated with the steroid shots so far, that initially seemed to work, but now not so much.

My eyebrows were the first to be erased by FFA, around 3-4 years ago. Thought it may be due to my hypothyroidism then eventual thyroidectomy...Nope. I have micro bladed brows now. 

Then the condition moved to my hairline...my beloved widow’s peak has been erased, and my hairline has receded probably an inch with extreme thinning on my temples and over my ears. 

I am 48 years old...My thick eyebrows from yesteryear and naturally curly hair that’s gradually falling out, have always been with me, and part of my identity...I feel like I’m losing myself and am looking at a stranger in the mirror now,  and it makes me feel so sad and depressed. Of course my friends and family support me, saying I notice it more than anyone else, but I still feel so down and out. I know “it could always be worse”, but this is still an aggravating and challenging nightmare...a little part of me goes down the drain or in the trash, with each strand that falls :(

Sandy, you’re such a positive inspiration to me if my condition totally takes over and it’s time  for wigs...Thanks so much for of you’re suggestions from your experience. I’m going to copy and paste your wig info for my possible future.

Thanks to all of you, again! XO

HeatherG

Permalink Reply by Toby on March 10, 2019 at 5:38pm

I have not experienced what you describe. On a small scale, i cracked a tooth and had to have it extracted. Lot of blood 1st day and tender mouth for a week. Interestingly, my FFA was quiet during this week and I was not putting on the clobetosol and skipped the medication finasteride for 3 days.