Friday, January 6, 2012

Short Anagen Hair Syndrome ~ Our Journey Part One

I've held off on writing about this for quite some time, but have now decided to share.  My hope is that our journey might shed some light for others.  What we do or don't may or may not change the outcome but we are willing to try.

This is Karley's story:

Prior to two, her wasn't growing and we were giving it time.  Henry's hair was much like Karley's but then after two, his hair was growing normally.  We waited with Karley until after she was two.  We saw little growth but didn't do anything about it, but it was always in the back of my mind.  {When I say normally, I mean approximately a half inch a month.

Then she turned three.  We heard a lot of, "oh, will grow, give it time", "She's fine, it will grow."  Just prior to her starting school, I really wanted answers.  I started googling and came up with Short Anagen Hair Syndrome.  As a hair stylist, I'd never heard of it, nor had I seen anybody who mirrored Karley.  A few clicks, an even better understanding of hair, and finally a facebook page for Short Anagen / Loose Anagen Hair, I knew that's what she had.  There are many girls who look very very similar to Karley.

Short Anagen Hair Syndrome ~ is a condition where hair does not grow beyond a short length, due to an unusually short duration of active hair growth (anagen phase).  Most cases are associated with fine blond hair.

I talked with her pediatrician, {who was one in the camp of, "it will grow"}, had never heard of SAS.  I was referred to a dermatologist office.  Since I was pretty confident that her hair had a short anagen life, I didn't see a reason to go to a specialist but did request somebody who was familiar with children. 

Pretty much one look and the Dermatologist confirmed her to having Short Anagen Hair.  She also has some scalp condition {like cradle cap} but that wasn't the cause but certainly wasn't helping any new hair growth.  She gave me some tar shampoo and that was it.  There is also a condition very similar called Loose Anagen Hair Syndrome but we didn't feel this was Karley's case as her hair doesn't come out easily when pulled.  We have Sophie to thank for this confirmation.

There isn't a cure for SAS.

I reported back to her Pediatrician and left the facebook group.  I was heartbroken.  I didn't want to be reminded of this.  We see our daughter for how beautiful she is and as parents hope to help her see her inner beauty that shines tremendously.  But, in the back of my head, I hear people throughout my life speak about this or that person who has "two hairs on their head", "doesn't have any hair", etc all in a negative fashion, {like the person could help it?}.  I remember sitting with a group of women telling them about my daughter, then they start talking negatively about older girls who, blah, blah blah.  I cringe.  I hear this as my baby. 

Karley starts school, we move on.  Until recently when we've noticed her interested in hair.  She pets her cousins pony tails, she hand brushes her sister's hair and she hand brushes her own hair, in what looks like hopes of it being longer.  All the while, never saying a word.  My husband and I just exchange looks of sadness for a little girl who would love piggy tails.

I re-join the facebook group.  This time I see a few people talk of a Gluten Free diet.


Part Two can be read here

In Christ,

Tina

29 comments:

  1. So sorry to hear that she has SAS . . but she is so beautiful! I am interested in hearing about if the gluten free diet works!

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    1. Thanks Katie! I will update on how it's going.

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  2. What a fantastic mother Karley has, to be so diligent in finding out everything possible!

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    1. Thanks Cari.....we'll see how fantastic I am when I say no to pizza!

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  3. Never hurts to try the gluten free diet, a wish and hug for lil karley bug from us.
    The 'settes

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    1. Thanks Mrs 'Sette! And thanks for all the grocery store tips!!

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  4. Hugs, Tina! I'm glad you shared. Our worlds of experience are so small and being allowed to understand the struggles of others is a gift.

    Karley is beautiful!

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    1. The main reason why I shared was because there really isn't anything out there unless you find the facebook group. For other moms to be able to connect or just help in general.

      Thanks for all the tips Katie and congrats on your new baby!

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  5. Haven't stopped thinking about you since we talked yesterday...so interested in what you find out next week. Love you - Holly

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    1. Thanks for all your help with everything Holly! Mostly, thanks for listening to me work through all of this!

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  6. Karley is a beautiful little girl regardless! I met a girl who had LAH growing up. I can understand why it hurts so much to see it. It's good to see though that you and your husband are aware of it. I hope you'll post the rest of the story.

    Blessings and hugs!
    Deborah

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    1. Thanks Deborah....we think she's a gem! I don't really even notice until I notice. She is beautiful!

      Thanks for your support!

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  7. Nice to have answers. You are such an awesome mom to look into alternative options to help your kids along the way! Excited to hear how the "diet" works. God Bless.

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    1. We have a diagnosis and pray the gluten free gives answers. It will take time. :) Thanks for the suggestions and e-mails you have sent Jo!

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  8. She looks so cute with short hair! My niece who was diagnosed with Celiac's disease lost her hair before the diagnosis...but she was also vomiting and losing weight too. I would try the gluten-free diet though so at least you can say you tried it. Thank goodness it isn't anything life threatening, and they make such adorable headbands now, she can always look fashionable and girly :)

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    1. Thanks Colleen! I am grateful she doesn't have Celiac Disease and that they are so many options out there. We love headbands and small clips! :)

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  9. She is so incredibly beautiful, with short hair or NO hair. I'm so sorry that you've had the misfortune of dealings with people who focus on outer beauty. As you know, the Lord cherishes our heart, not our hair, and I know you will raise Karley up to believe that too. I'm praying for strength for you Tina, as I know it's so hard for a mama to think of their little one being teased, as the world can be so mean. But I know God gave her you as a mama for a reason, and He will equip you with just the right words to say, hugs to provide, and wisdom to impart to raise a girl who is so much more than the hair on her head. Love and hugs to you!

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  10. We just found out today that our 5 year old daughter has SAS. We have been told (like everybody else) that her hair will grow, and not to worry about it. Finally, I had enough and wanted an answer. Little did I know that I would be COMPLETELY blind sided and find out my daughter has SAS. WOW! That was the only thing I could think about at the exact moment. The doctor had to have thought I was the craziest person in the world from the tears streaming from my face. AS my beautiful little girl looked at me and asked, "Mommy, why are you crying?" My only response was, "Because Mommy is silly." She is (for now) content with the hair that she does have, and I plan to leave it that way. Every now and then I will hear a little comment from her, and I just smile and tell her that it's because she has such beautiful curls :). I am at a complete loss as to what to do at this moment. The dermatologist told me to start Rogaine. Not sure when I will.. like I said, for now, why clue her in on what's going on when she is happy. I would like to join the fb group.. but can't seem to find it. GF sounds like an awful lot of work :/. I know by the grace of God I can do it, but it's going to be hard. I am at a loss as to where to even begin to start with that??? Thank you for starting this blog! It feels great to know I am not the only one with a little beauty queen that has short hair :)

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  11. Hello Tina,
    I am so glad I read this. Your story sounds a lot like mine. I have a 3 year old with SAS and an almost 2 year who doesn't. I showed her a picture of your daughter and she said "she looks like me!". Her dermatogist said that she has a lot of little, mostly blonde girls with SAS, and she she's the hair really start to grow at about the age of 5 or 6. Have you heard otherwise? Thank you for sharing your story.

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    1. Hi Kristy,

      Thank you for taking the time to comment. My daughter has said that same thing when she sees other girls!

      From what I can tell, in my humble opinion, LAS girls seem to grow out of this around 6 or puberty. I am not so sure about SAS. We'll see based on our own cutie! :) I also think the LAS girls have more results with gluten free.

      Tomorrow {2/15} marks one month of gluten free for us. I'll take pictures and we can all take a look and see what has happened or not over the last month.

      God Bless,

      Tina

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  12. Hello, I have really appreciated reading your blog. My almost 7-year old blond daughter has SAS (I have diagnosed her myself, the dermatologist was not really that helpful!). For the past 6+ months she has been really fixated on her hair, constantly pulling on it, playing with it, looking in the mirror. I can tell it's really starting to bother her. Can you direct me to the Facebook page you mention? All I see is one called "Short Anagen Syndrome" with some likes but there is not much else. Thanks very much.

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    1. Hi Becky,

      I wasn't able to send you an e-mail so hopefully you check back. The facebook group can be found here:

      http://www.facebook.com/groups/saslas/

      If you aren't able to find it by the link the group is called:

      Short Anagen & Loose Anagen Syndromes (SAS & LAS)

      Blessings,

      Tina

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  13. My daughter has LAS and I have been so distraught by it over the years. Mostly because of my worry of how she was going to feel and view herself as she got older. She is beautiful and her hair has natural curls. I love it as it is (and I am not very good at styling hair, so I have been okay with it). But it made me worry because over the years, she always comments on her friend's long hair, or combs mine or her dolls and seems so obsessed with long hair. She always says "mommy, I wish my hair was long and pretty like yours". So....I cut it off. I cut my hair shorter than hers, so I could show her a girl CAN be pretty without long hair. I showed her pictures of me several years back when I chose to wear a very short style. She smiled SO big when she saw that her hair was longer than mine after I cut it. She is 6 now and her hair finally seems to be taking off. It has always been short all through preschool. People thought I chose to style it short and we just let them believe that we had regular hair cuts, when in truth, she could have gone 5 years without a hair cut. Well, except for maybe a bang trim. But now, she is delighted to see that she can wear pony tails and often tilts her head all the way back to feel her hair at her back and see how far it has gotten. It is terribly sad how girls even that young perceive themselves as less when compared to others. I am writing to give other mom's hope that LAS will get better as we are told, as hers finally seems to be. Granted, her hair is thin and if she pulls her own barrette's or rubber bands out alone, she breaks the hair easily, so she has a VERY thin spot on the top of her scalp. We have to be careful. All these years, I have told her to let mommy put her hair up and take it out, to avoid excessive breakage. I comb the tangles out of her hair myself very softly, so we can avoid breakage. And mostly, unless there was a special occasion, holiday, pictures, etc, we just didn't put "pretties" in her hair on a daily basis. It seems whenever we did that a lot, it would break more often. That has definitely helped, just letting it be free of things that would pull on it. Thank you so much for this post about SAS and LAS. It is so nice to see you are not alone when literally every other girl in your child's class has long flowing hair with beautiful "pretties" in it and even if your little girl doesn't say anything, watching her play with her friend's hair or put on Repunzel from Tangled wig at home and dance around is enough to break a mother's heart. There are SO many worse problems our children could have and I am thankful it is only LAS, but it's a worry that parents of a child who has it can only understand.

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    1. Thank you for these beautiful words. We avoid "pretties" as well and now, both girls would rather skip headbands. We talk little about hair. I have noticed, when she visits cousins with long hair, a small bit of chatter about long hair. I cringe but nothing more is ever said. School starts again in a few days and I have thought about it a little, praying all the kids are just as nice as they were last year.

      Thanks again for stopping by!

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  14. My daughter had LAS when she was 4...also a blonde with thin,fine hair. Her hair became so thin on the sides that you could see her ears. By 5 1/2 her hair had all grown back and she has a beautiful head of hair. However, she is now 7 and the LAS seems to be back. We are going to see a derm. in Nov. I noticed hair on her shirt and when her hair was in a pony I realized that she has lost about 2 inches from the nape of her neck and she is getting all new baby hair on the nape and around her face. It is frustrating but you look at their little faces and spirits and realize that it truly is "only hair".

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  15. Hi,

    I diagnosed myself with SAS at 48 yrs. old. This syndrome bothered me to say the least all of my life. I had no idea what the problem was until now. I always thought my hair would grow, especially in the back neck area. However, I just found an article that states that SAS can be successfully controlled with minoxidil and cyclosporine -- a combination therapy. I am trying to get an appointment with a dermatologist (never helpful) to discuss this therapy.

    I just thought I would share. Let your younger daughters know, they are more than just their hair. Dont spend a life time stressing over it. Just get extensions if possible and call it a day.

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  16. I just stumbled across your post... my daughter was diagnosed with SAS today, ar age 4. I cannot believe the resemblance of my own daughter to yours! She is beautiful. Thank you for sharing your story. God bless.

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  17. Hi, I have just found this post and wondered how your little girl was getting on. We think our we girl also has SAS and I wondered if the gluten free diet work or did you try minoxidil? Thanks Julie

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  18. Your last post seems to be on 2012, now 4 years later, wondering how is your daughter doing? We are struggling with SAS as well. Hope all is great! -Lily

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Thanks for making my day!