Replies to This Discussion

Permalink Reply by BubbaLu on April 20, 2018 at 4:09pm

Thanks for asking that question.  I have been thinking about cutting my hair totally differently than I have ever worn it - very short.  I think I would do that before I totally shave.  

Permalink Reply by AnnieMay on April 24, 2018 at 8:51pm

Hi Agneta,

I could never shave my head either. I'm sure I would like an alien with my very shiny scalp, protruding veins and horrible skin. My scalp is sensitive and I'm a jeans and t-shirt girl so I can't imagine wearing a wig. I was "officially" diagnosed a year ago. I've had so many nightmares. What will I do when my daughters get married? I have cried and cried about this. A year of obsessing everyday about this, a year of monitoring my hairline, a year of feeling beyond down about my skin, a year of losing all of self confidence looking at others with such beautiful skin and hair.

I have some anxiety issues anyway but this was all becoming too much. I started having panic attacks.I spoke with my dr and started on an antidepressant. I didn't think I would but it's really helping. I also read this wonderful article that said to try and focus fully on the next 16 hours only. Not the past or the future but this moment in time. I'm trying to think that way and not ruminate about the future. Easier said than done I know but life is so short. I had to do something to move forward with my life. I don't know if you have thought about antidepressants but it might be something to consider. Thinking about you and all of us as we try and navigate our way through this.  

Permalink Reply by ATB on April 25, 2018 at 1:23pm

Hi! My FFA hair loss pattern is similar to yours. Last year I cut my hair from shoulder-length to very short after my diagnosis, then I shaved it all off, and then I had a barber shave a pattern into a micro-short buzz. The pattern looked great (compliments from strangers!) but the style was tedious and expensive to keep fresh. I decided to grow out the hair I still have and wear headbands. Half-Buffs work great--they stay in place and cover a 6head, and the patterns include  conservative colors and prints so they are office appropriate (also wild prints and colors :-)). I am very lucky because my scalp is smooth and my head is a good shape, so I might learn how to shave it myself and keep it that way. It is the ultimate wash and wear!

Permalink Reply by ATB on April 26, 2018 at 9:36am

Hi Agneta,

I sometimes get red patches in random spots on my scalp and neck. I can feel the heat and itch when it is happening and it is challenging to resist touching, which inflames it more. It bothered me more until my diagnosis a year ago; knowing that it's just the alopecia helps me get on with the day. My husband used to worry but now he knows I'm okay.

I'm glad you mentioned how wigs itch! I have a couple wigs, and I receive compliments, but they itch. As I get used to me looking more like myself, I leave the wigs in the drawer.

The stares and questions used to really bother and distract me. As I learn more and realize that other than the uncommon appearance I am healthy, I cope better. I work in an industry that has few females with brown skin, so I already knew how to get used to people staring at me for no good reason.

My step-grandfather had vitiligo. We never spoke about it. He treated my grandmother like a queen--that was all that mattered. One day a neighbor visited with his very young son. The man encouraged his son to shake hands and say hello, but the son stared and got scared. He asked his father "why does his skin look like that?" My grandfather smiled at the boy, looked him in the eyes, and said his skin was both chocolate and vanilla, nothing to fear, and he would shake hands whenever the boy was ready. The boy looked so surprised, then he smiled and hugged my grandfather, who laughed a big belly laugh. I learned so much from that moment.

I hope that each day brings you peace. If we meet on the sidewalk, I'll smile right back at you!

Permalink Reply by ATB on April 26, 2018 at 10:06am

Here is my example of something you could try. It isn't fully shaved so the pattern can show, but I did have the barber shave my 6head to clean up the straggler fuzz. Eyebrows and lashes are all makeup. I wore this style at an outdoor concert (you can see my sunglasses tan lines, ha ha!) and felt like I really rocked it!

Permalink Reply by DianeM on April 27, 2018 at 8:54am

You look fantastic! Thanks for sharing!

Permalink Reply by BBrugger on May 13, 2018 at 1:37am

Thanks for sharing.....I have been playing with the thought of shaving.....my forehead is just slightly less than yours but I definitely have no hair inch wise around my ears.....at this point I can still rock a headband at home.  My concern with the buzz cut was itching and possible red bumps.

Permalink Reply by maremo on April 27, 2018 at 7:44pm

ATB, you are an inspiration!

Permalink Reply by Minter on April 28, 2018 at 7:24am

@ATB you look fantastic and yes, you absolutely do rock your attitude and hair! Thank you so much for sharing your story and picture. 

Permalink Reply by Sequingirl on May 10, 2018 at 1:57pm

I might be there.  Diagnosed almost 7 years ago and still losing hair.  It’s so hateful.  Grew my hair and my hair is curly and the style covers it well enough ...as long as I’m indoors.  Tired of having to wear hats most places because I still can’t deal with the looks....especially from other women, the look of fear.   I just put the down payment on a custom hair piece .  I feel sick and conflicted about the decision.  Why try to hide anymore?   I’m a practicing always-growing Buddhist so the struggle is big....If I shaved my head I’m sure I’d have wigs so the hairpiece choice really is making me feel sick.  I thought the loss had died out but it was confirmed a few weeks ago that it’s active again.  The amount of hair inbyhe rest of my head is outrageous ....then there’s the “right head”....and seeing all the veins on the exposed head is so disturbing.  I’ve not yet ever met anyone else with the disease so I’m coming to the conference this year.

Permalink Reply by Sequingirl on May 10, 2018 at 2:03pm

Meant to write “eight head”, not “right head”!