Looking for People affected by Loose Anagen Syndrome?

Question

My 9 year old Daughter has Loose Anagen Syndrome.  ( http://www.webmd.com/skin-problems-and-treatments/hair-loss/hair-shaft-defects)      A rare Condition that causes her hair to almost not grow,  fall out and break off easily. It only affects blonde females at a young age.  Her hair has never been cut and barely touches her shoulders now. Its very thin, She has about 1/4 of the amount of hair a normal child has. 

There is very little information online and we live in El Paso, where almost everyone has beautiful, thick, black hair. It breaks my heart when she tells me that the other girls braid each others long hair during recess and she could not do it. 

Doctorswe went to see in my area never treated anyone with Loose Anagen Syndrome.

We have tried all sort of things, special shampoos, Biotine Pills,... nothing worked.  I am looking to find people who's child suffers from the condition or someone who's outgrown it to give me some tips that might help my daughter.

Thank you very much.

FujikoPez · Accepted Answer

My almost 5 year old daughter has it. There really isn't much support out there. I think that may have to do with the fact that there really isn't anything you can do about it but wait and see if it gets better as they get older. I'm lucky in that my daughter really isn't a "girly-girl" and doesn't care much about her hair. We stopped using hair clips, because we noticed that they would always fall out and take a few hairs with them. We do headbands, mostly, when she wants something in her hair, because they don't pull on her hair.

Anonym · Answer

My sister has it she is 4

Looking for People affected by Loose Anagen Syndrome?

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