Ophiasis Pattern Alopecia Group

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Ophiasis Pattern Alopecia Group

Members: 38
Latest Activity: Apr 1

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I'm cold

Started by Sunflower25. Last reply by Maddie Apr 1. 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 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. :-/

Comment by Starshine on June 24, 2013 at 7:41am
Hi Sunflower. I remember your battle with diffuse AA. So sorry to hear it has reared its ugly head again. I hope it does not get too bad this time. At least it is not diffuse this time. I am having my own battle with diffuse ophiasis but methotrexate and injections have kept it at bay for now. I am also trying onion juice on the back area.
Comment by JeffreySF on June 24, 2013 at 12:15am

Alopecia can be a Bitch can't it? Grrrrr
Hugz,
Jeff

Comment by Sunflower25 on June 23, 2013 at 12:51pm

Hello everyone. :)

So a few years back I was diagnosed with diffused AA - lost 90% of the hair on my head and body in just 6 months. Then, it all grew back. Was good for 3 years!

Its been back for almost 2 years now. This time, spots instead of diffuse. My right arm is covered in spots, one on my left leg, and spots on the top of each ear and the bottom of my hairline. As long as I keep my hair down, no one is any wiser. Seems to be getting worse though, not sure how much longer I'll be able to hide it.

Comment by Susan Innes on May 30, 2013 at 4:36pm
Wendy, I love the comment about the control issue. While the hair is coming in and falling out, we have good and disastrous days but once we decide to shave our heads, our hair is no longer controlling our emotional state; the chains are gone and we can proceed with our lives!
Comment by Kristy on May 30, 2013 at 3:05pm
Yep, I had crazy long think wavy curly hair as well...when I cut it to chin length I wanted to puke. I am so much happier hairless than I was with it all going. It sucks at times, but sometimes I wonder what I would do if it all came back. My girls see pics of me and are surprised that I had hair as they only remember me as bald. It took me a few years but I, too, have accepted it for what it is. I have so many other issues that hair is now on the bottom of the list. I would have paid anything to have it back when it was going. Now I'm not so sure. I really learned who my friends were when I went through this ordeal and it was life changing for me. I'd like to think that I'm a better person because of it. But when there is a cure I will be standing in line.
 

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