Tuesday, January 31, 2012

Short Anagen Syndrome ~ Meet Ava

Meet Ava.  She's a seventeen and was just diagnosed with SAS.  She wrote me an e-mail and has graciously allowed me to share her story and pictures with consent from her mother.  She writes that she was just officially diagnosed a month ago after years and years of wondering why her hair didn't grow.  She further says, "EVERYONE always used to say it will grow wait until you hit puberty and stuff, but nope!"

Her mother diagnosed her with SAS about a year ago, after doing her own research online, but just recently visited a dermatologist for an official diagnosis.  

Ava lives in New Jersey and by recommendation of her dermatologist was asked to be a part of a study for Short Anagen Syndrome in New York City.  She saw about 100 doctors and they all touched and looked at and pulled on her hair.  There were top dermatologists from all over the world and all looked at and discussed her hair.  She said, "There have only been about 10 recorded cases and they are really interested in short anagen syndrome.  They are trying to learn more about it".   {I think her doctors need to meet the facebook group!}  The doctors had a meeting about her hair and all agreed that it was Short Anagen Syndrome.

She further said the doctors believe this to be hereditary and that Loose Anagen Syndrome {which Karley does not have} is more likely to get better with age. 

Ava also said, "There were a few doctors at the study who had patients with Short Anagen and I learned that there were a few cases where they actually used women's rogaine and it helped... only problem is there are side effects and there cases were much worse then mine so they were willing to try anything. The side effects are when you stop using it your hair could possibly thin ( if I remember what the doctor said correctly, it was something along the lines of thinning or falling out) and you can grow facial hair!"  {For my own piece of mind, to do Minoxidil or not, I am going to look into this further.  Also, I am going to call Karley's dermatologist to see if there is any more information from when we were there in September 2011}

Two pictures of Ava when she was little.





Ava commented on a few other things we happen to discuss in the facebook group. 

"I try to cut my hair every couple months only a tiny TINY TINY bit, just to get off the dead ends.  I never had to cut my hair a lot which is obviously a really common described 'symptom' of Short Anagen, but I do notice the tiny trims help with keeping it healthy."

"I don't wear my hair in a lot of headbands, clips, or hair ties anymore because my hair breaks very easily and I feel like it is fragile.  It seems that headbands wear off my hair in the front and clips and hair ties make it break easier then normal.  Of course, I still use them but I try not to leave it in for a long period of time.  I use them when I really need to, otherwise don't."

"I also take biotin and chewable vitamins everyday.  I stopped a while ago and recently started again and notice my hair does feel and look healthier when I take them."

"I have tried everything from sulfate free shampoos, silk pillow cases, coconut oil treatments (suppose to be very good for hair), hot oil treatments, not washing it everyday, not brushing it while its wet and letting it air dry, only brushing it with a wide tooth comb, doing deep conditioning treatments once a week, and the list goes on and on but of course nothing has really made my hair grow."

This is Ava now.  She called this her "fun beach hair"  I think she's absolutely beautiful! 



And for fun she does add extensions and said nobody can tell that she has them.





In her e-mails I believe her to be a very very beautiful and inspiring young woman who has a great attitude regarding her hair and diagnosis.  I honestly don't think SAS defines her.  She is a very sweet young woman!

She has been very helpful to me and I hope that you find this helpful as well.  She has agreed to answer questions you may have for her via the comments thread below, when she can.  Please check back when you can.  And please remember she is seventeen.

God Bless,

Tina

15 comments:

  1. Incredibly beautiful young woman inside and out.

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    1. Thanks Julie! It's great to know there are *beautiful* people in our world isn't it!! :)

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  2. She looks great with her "beach hair". I wonder if the headbands and clips aren't good for her hair, then wouldn't extensions be really bad?

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    1. They're just clip ins :) By Jessica simpson called hairdo.. I'd never get actual extensions!

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    2. My daughter looks just like you as a child (she's 6 now) and I hope she grows up to be as beautiful as you! She seems to have short anagen syndrome as well as I have only cut her hair once and then only the tips to get rid of dead ends.

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  3. She IS beautiful!! I'm glad she has an actual diagnosis for her hair. I wonder if there are far more women out there with SAS, but just don't know it. They just figure their hair doesn't grow...

    I'm so glad you have all these resources for Karley!

    Blessings!
    Deborah

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    1. Hi Deborah,

      I think there are many people out there that have been told, "it will grow" and it never did. I do wonder and I hope that by sharing there might be more people who can connect.

      Thanks for listening!

      Tina

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  4. She's gorgeous! God Bless, Ava-- what a wonderful connection you've both made with each other :)

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    1. Very much a blessing for ALL of us!! The mom's on facebook pretty much all have little kids. It was so great to hear from an young woman on her experiences. A little peek into a beautiful heart we hope our daughter to be as well! :)

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  5. Ava you are so beautiful! Thank you so much for sharing! Just wondering if you consider using Rogain? My daughter has the same syndrome and was recommended to use it twice a day... I am very afraid of using it but would appreciate your opinion. Thanks! Silvia :)

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  6. Very beautiful young lady. Was surprised by the dark hair as most I see are blonde. Also have a question...your hair seems to not be real thin like most...or is it and just appears thicker.

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  7. Thank you for sharing! It's good to hear that the extensions work...a glimmer of hope for those difficult teen years!

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  8. Hi! My daughter is now turning 15 and last year was diagnosed with short anagen syndrome. I took her to many dermatologists , holistic doctors, and others. My daughter was ready to kill me! I finally found a hair specialist from Italy that comes to Miami 2x a year and promised my daughter I would not search more after this diagnosis. I did keep my promise and was ok with it all. We both feel lucky with the diagnosis because her cousin has alopecia and has recently lost all her hair at 14--and we totally feel for her!The teen years are hard and other girls can be super mean. I think you look beautiful and I will share this with my daughter--thank you!!!

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  9. I saw your pictures and immediately said "oh my gosh she looks just like Alex." (my 7 year old daughter) We have seen specialist and they had no idea what she may have had one doctor said maybe Anagen Syndrome but was not sure. They ruled out alopecia because she had hair on arms and legs and eyebrows. Reading a couple of articles online I came across this one and finally have a reference for someone older then 3 - 6 years of age living with this syndrome. My daughter, like Ava, has a beautiful face to carry it and I love that my daughter has owned her look but I know she has moments when she says I wish my hair would grow longer at times. If anyone know of a treatment that has success please post it. I'm sure it will help a lot of others that are searching for the same....

    Loving Dad

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  10. Can you reccomend some specialists in NJ

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Thanks for making my day!