Showing posts with label Short Anagen Syndrome. Show all posts
Showing posts with label Short Anagen Syndrome. Show all posts

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

Thursday, January 26, 2012

Thoughts & Answers on Short Anagen / Loose Anagen Syndrome

While I was reluctant to share our journey with Short Anagen Syndrome I can see how it has proven to be a wonderful experience.  Wonderful, because, I have connected with a few wonderful Mom's and one lovely young woman who has SAS.

Today I will address a few questions that I received via e-mail.  Both of the Moms asked very similar questions.  Before I do, I want to say, these are my non-medical opinions based on some of the comments I have seen within the facebook group, friends, chiropractors, and nutritional chiropractors.

It doesn't appear that there was a pattern in what anybody did or didn't do during pregnancy, whether babies were breast fed, soy or non soy formula fed.  Babies were big, little and somewhere in between.  Some vaccinated, some did not.  Some did but delayed, others right on schedule.  I was told that an alternative doctor believed there to be a link to the MMR vaccine.  But I think among the facebook group some didn't give the MMR.   

I have heard that SAS is genetic and I did hear from the dermatologist we saw that LAS was {more on that when I talk about the young woman, Miss A that e-mailed me}.  I've heard from countless women that doctors have said "it will eventually grow" or "when they hit puberty it will grow". 

Should we have to have a conversation with our daughter about her hair growth, we will not be telling her to hold out hope for a magic age.  Instead, we'll deal with what we have rather than hoping for possibilities, even though I may secretly hope / watch / pray for this. 

One thing that does seem to be pattern, it's all girls.  Is that because for the most part boys wear their hair short?  Or does this mostly, or only, affect girls? 

I was also advised that Chinese medicine would say this was a liver issue in Karley, possibly due to how close my older two are in age.  {15 months}  If I remember this correctly, I was not postpartum long enough, to have enough, for baby number two.  Which then would mess with the meridian? Chi? of the liver in the second baby {Karley}.  I have not looked into this further.

We won't be doing Minoxidil or any other chemicals.  We feel she's too young and there a lot of side affects.  I just don't think adding this chemical would help us long term. 

She gets biotin in her multi-vitamin.  I will at some point look into adding more than what is in the multi-vitamin.  First, I'll have to see what is recommended and what would be too much and if there are any side affects of too much.

The reason for not adding this now is since we are doing the gluten and dairy free diet, I don't want to add anything else so we can make sure gluten really is the reason {or not} for hair growth and not both. 

I am not really sure when parents receive this diagnosis but from what I can tell, most seem to be right around 4 or 5.  My guess, based on my own reason for getting a diagnosis, is that when our little sweeties are going to be going to school, we'd rather there not be anything noticeably different.  I worry that kids will ask her why she doesn't have long hair or even worse say she doesn't have any.  What will she say?  I can only see her little heart break.

That brings up another can of worms.  Do we, as her parents say anything or wait for her to say something to us.  We've decided to not bring it up until she does, or we think it's necessary.  I hope that the fact we don't make a big deal of it, makes her think it's not a big deal.  However, I think she's clued in.

When coming home from a dinner on Saturday night the kids asked for a movie night.  We said yes and then they asked about having popcorn.  We said yes to that too, then Karley in the smallest voice, from the third row of the vehicle asked, "Is popcorn gluten free".  We haven't told her she's gluten free.  We have said that Dr. M told us that she should not eat certain foods to help her tummy feel better.  I talk on phone, and my husband and I must talk freely.  Cats out of the bag.  This is fine, obviously she understands.  On the way home from the nutritional chiropractor if I asked her if she had any questions about anything that was happening, she said no.  So far, we will let her lead.  She's been really good about being gluten free, to which, I am truly amazed.

Here was the scenario with the nutritional chiropractor.  I was a bit skeptical, at the same time I also believe there is validity.  I purposely did not tell him our plans of going gluten and dairy free and we didn't do it until after we met with him.  I wanted to see what conclusions he had without my mom theory.  He did a few seemingly basic tests and a urine analysis.  He found her to have issues with her intestines and gall bladder.  {This didn't really surprise me because more often than not I was asking her if her tummy hurts ~ think BM.}  In addition, he noted that she doesn't break down her protein.  Protein equals hair.  He asked about her finger nails, I mentioned that they grow, but recently she's been biting them.  He asked if she bites them because they break, could very well be.  I rarely cut her fingernails, while the other two children's a long every time I turn around.  Not sure if this is biting because of biting or not.  I never see her doing it so I wonder if she just rips off jagged edges from breaking?  Anyway, the nutritional chiropractor recommended a multi - vitamin, a liquid protein so she could absorb the protein and bypass getting it via food as her intestines are not breaking down the protein.  Hence hair and possibly nails.  And then one other probiotic type vitamin.  We passed, at least for now, on his vitamins.  We felt if we could clear up her tummy issues by going gluten and dairy free via diet, it would do the same thing but without adding anything.  We'll see, we can always try it later.

How rare is this?  I don't think it's as rare as it may seem.  The medical community seems to not know much about it, or see a lot of cases.  However, when you talk to people, everybody knows somebody that looked like our kiddos.  But with a "it will grow" or "wait until puberty" stance, who is tracking?

I do know of one young woman, Miss A, who I will post about soon, that is being evaluated.  I am sorry that is lame say I'll post soon, but she gave me a lot of wonderful information and I need to sift through it and I'm plain beat today.

We are not doing any shampoos that are fancy Nancy {as my daughter likes to say}.  Not that I am opposed to such things as mane n' tail or whatever it is, but again, I am only doing one thing at a time.  Also, I did mentally note that somebody said they thought it just fluffed the hair.  As a hair stylist, yes, many products can do that.  We stay away from shampoos that have a wax build up, and yes, many many do.  I always suggest buying decent salon shampoo and conditioner but really for Karley, I am just fine with real bar soap.  Meaning your organic multi use bar soap.

How did I find out about gluten free.....the facebook group ~ Short Anagen & Loose Anagen (SAS & LAS) Hair Disorders.  Please join.  A women fromthe group was kind enough to send me a long e-mail with pictures of her daughter before and after the gluten free diet.  I was sold.  She also had a lot of tips, menu ideas and such.  After that I had Celiac Disease ruled out just to make sure.  You can read more about those first posts here and here.

Gluten free does seem like a lot of work.  I have a few wonderful friends who are gluten free and have helped me tremendously.  As well as the facebook group and a great friend who just knows everything about food.  It seems to me more and more people are having tolerance issues.  I menu plan so as not to sit in the kitchen wondering what I am going to make.  That helps. every. single. meal. 

I pretty much knew that Karley didn't have LAS.  About the time I was researching Karley's younger sister had a stage of pulling hair.  I was worried it come out by the clumps, it didn't.  That pretty much sealed up the my diagnosis of SAS rather than LAS.  The dermatologist confirmed that as well.  I understand that the LAS kiddos will have hair that comes out easily and without pain? 

I will update pictures mid February for any changes. I don't expect much the first month.  And I will post information from Miss A in a few days.  {We have family coming to stay with us and I know I won't get to it until after the weekend, so sorry.}

Thanks for your support, kindness and prayer.  Please do share any information you might have either in the comments or my inbox. 

God Bless!















Saturday, January 14, 2012

Short Anagen Syndrome ~ Part Two

You can read part one of this post to know more about how we came to the Short Anagen Syndrome results and this post will explain why we are going gluten free. 

Last week we had Karley tested for Celiac Disease to rule out a severe gluten issue.  Gluten seems to be beocming more of a link to SAS/LAS.  I had hoped that Celiac Disease was the answer, but after a lot of reading and talking with my sister, I realized we do not want her to have Celiac Disease.  With CD are a lot of other negative things that can happen.  I also now realize that CD and gluten intolerance can be different, at least that's what I believe to be true, although I am not a medical doctor, just a Mom with a hunch.

While we waited for the CD results to come in I got a book from our library called, What's Eating Your Child by Kelly Dorfman.  I find it fascinating, with one problem, it's going to cause me to break my New Year Resolution of not buying books for 2012.  I have the brand new library copy and want to underline like crazy.  Contrary to what our ped doctor says, I do believe that Karley could have a sensitivity to gluten without having Celiac Disease.

Also, while waiting for her test results we took her to a chiropractor/nutritionist.  He performed a couple of tests {I did not mention my thoughts on her possibly having an issue with gluten}.  He came up with a few things, two major.  She is not breaking down her protein {hence the hair growth} and has a gluten sensitivity, maybe that's one in the same.  He recommended a few things among them gluten / dairy free and re-visit in 30 days.  Because I am measuring hair growth I want to do this for three months minimum.  {Please pray for us that we can do it for that long and of course success.}

I also want to add one of the reasons we decided on researching the gluten free avenue was that a friend from the facebook group e-mailed me pictures of her daughter explaining how she arrived at going gluten free.  One of the things that she mentioned was that she had a chance encounter with Dr John Kim who suggested going gluten free.  She was kind enoug to send pictures that reflected noticeable changes, food suggestions and how to shop.  What a blessing! 

Our ped doctor called to confirm that Karley does not have Celiac Disease {Praise God!}.  The doctor has little faith that going gluten free will work, that it's a fad diet and that if a person doesn't have Celiac Disease they aren't sensitive to gluten.  She did offer that going gluten free won't hurt anything and wished us the best of luck. 

And I'll take the wish for luck, we probably will need it.  Any prayers that can be offered up for Karley {and her food providers} would be even more appreciated.

Now it's game on. 

This morning I vaguely filled out a one week meal plan {I can usually breeze through two weeks}. It was a little harder this time around.  I did get a little advice from Misty and a few other tweeters and I was able to pull together a list.  I have a few more recipe books coming as well.

Our plan was that together as a family we would go gluten free in hopes that Karley would see little difference.  My thought was that things would be a little more expensive but I had no idea just how much.  Needless to say, when it comes to buying pasta, I will be making gluten free for Karley only.  It's expensive.  I also need to learn where I can get more for our money, where / when to make things differently for her.  I can see one challenge will be school snack.  They have to bring a store bought snack to share.  So for two days a week I have to come up with something relatively inexpensive for her to eat {willingly, while other kids are eating fruit snacks}.  At home we'll all be eating more fruit and veggies, but school will be different. 

Needless to say, I am feeling a little bit of an uphill climb right now.  It was thinking I would be able to make anything with gluten free flour.  That doesn't seem to be the case, instead there are many ingredients that need to go along with the gluten free flour.  I will forge on, do more re-search and find better ways to shop.  I'll stick with one week at a time in hopes to not be so overwhelmed, thinking about how to do this.  Baby steps.

I hardly think gluten free eating is a fad.  It seems it can be a difficult, expensive way of eating and at times not quite as fun ~ who doesn't think pizza is fun?  I also realize that we are lucky to have so many options today compared to 5-10 years ago!

Any tips, tricks and shopping advice is greatly welcomed! 

I will post some things I learn along the way and hopefully be able to post progress reports.

A huge thank you to all who have shared your thoughts, prayers, concerns and advice.  We love our little girl as she is, we only hope that we can help her in her hopes and dreams, now and forever.




In Christ,

Tina

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
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