Ophiasis Pattern Alopecia Group

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Ophiasis Pattern Alopecia Group

Members: 44
Latest Activity: May 8

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I'm cold

Started by Sunflower25. Last reply by Maddie Apr 1, 2014. 6 Replies

My hair loss seems to be fully in this pattern now - gone above both ears and down around the bottom of my hair line.  I'm missing about 2.5 inches from the bottom up.  I wanted to ask, does anyone…Continue

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Comment by Katniss on April 20, 2015 at 6:51pm

I had been trying not to obsess about my hair for a while so I stopped checking. But I was quite discouraged to see a chunk of my hairline missing when I put my hair up a few days ago. I hate that there's no rhyme or reason. I am shedding a ton of hair when I bathe but it seems to be coming from all over. Shrugs, who knows what's brewing up there...! Lol!

Comment by Lexi on April 20, 2015 at 6:12pm

No, my ophiasis just started on the nape of my neck.  I think when I started to shed heavily, mostly it was the nape area that probably was shedding, until I lost it all.  The back of my neck is totally absent of hair, and it is rising higher and higher also going up above my ears.  Nice, huh?  But the rest of my hair is just plain overall thinning in general.  Every day it seems, more and more lately.  Only a matter of time when wigs are going to be a requirement.  Every day. Read what Sunflower said.  Same thing. 

Comment by Katniss on April 20, 2015 at 5:06pm

How did your ophiasis pattern begin? I have previously had random spots all over my head that have come and gone. But I hadn't had any new spots crop up for months. In fact they were all growing in. But I noticed a new spot, right on the nape of my neck. Just a chunk missing and it's all stubbly which is how my loss always begins.

Comment by Lexi on March 13, 2015 at 9:15pm

curly1982 Welcome.  Saw your pics...hey, the back of your head looks just like mine.  Maybe mine is even smoother.  Sucks, right?  

Comment by curly1982 on March 13, 2015 at 6:57pm

Just saying hey, guys! Took me long enough to realize this is the group I'm supposed to belong to, and here I is :)

Comment by Lexi on July 16, 2013 at 8:43pm

Welcome to all the new members of my group. Comforting to realize that you are not alone in this journey.

Comment by Kevin on July 12, 2013 at 11:21am
Hi Starshine, you asked about Squaric Acid about a month ago. We tried it for about 6 months on my daughter and the only noticeable result was a pretty bad rash...the stuff is very caustic. I wish you better luck with the onion juice!

My daughter is 13, and she developed AA in Feb, 2011. The initial hairloss was rapid...she was wearing a bandana for the last month or so of 5th grade. The school asked my wife and I to come in and talk to her classmates about the condition...Luckily, the kids were very supportive. Unfortunately, she was completely bald by August, and entered middle school wearing a wig. It was a pretty good wig... I'm pretty sure that most of her classmates had no idea.

Her hair started coming back in the spring of 2012, to the point we couldn't get the wig to stay on, so we went with natural hair last summer and it grew in pretty well. She went back to school with this new short 'do', and she got tons of complements...life was good! But as we all know, this diagnosis is predictably unpredictable, and of course, hair started flying off her head again a few months ago...this time, the derm told us she had the Ophiasis pattern. Thankfully we made it through the school year without needing the wig (a drastically different style)...my wife has become an artist with the spray paint and hair particle powder that she found at a beauty supply shop.

We are nervous about what the future has in store, but we are certain that my daughter will take it in stride. She has been a rock through this whole process. She has not skipped a beat in her life, and has taken on more activity while going through it...we've actually tried pulling her back on some activity because we don't want to her to get stressed, but she'll have nothing of it. Don't get me wrong, she hasn't totally embraced her Alopecia, and she actually may still be in denial about the prognosis, but if this is the wrong way for her to deal with it, for once, I'm glad that she's not right!

Thank you so much for providing a forum for me to share and learn!
Comment by Starshine on June 24, 2013 at 9:32am
I am just cutting the onions and squeezing out the juice but really need to get a juicer. You can buy bottled onion juice on amazon but it has vinegar and salt in it and I dont know if that makes a difference. I have just started it so I dont know yet if it works. If anyone else has tried it we would all love to hear from you.
Comment by laurenmaitland89 on June 24, 2013 at 8:11am

Hi Starshine, does the onion juice work.

Comment by Sunflower25 on June 24, 2013 at 7:57am

You juicing your own? I looked in the store the other day, but was unable to find the bottles of it. :-/

 

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