My 5 yr old daughter was diagnosed with this rare condition pili torti yesterday. Has anyone had any experience with it? Her hair doesnt seem to grow on the sides, is brittle and has the shimmer due to the malformation of the shaft of her hair. Would love to talk to someone who has been though this. She wants long hair so badly, my heart breaks for her. Just looking for anything that will help but everything I read says there is nothing I can do.
The following user gives a hug of support to Kristysmith: heltin (10-11-2011)
Hi I know the feeling, My son was diagnosed about 3years old he is now 11yrs old and we could not find out much then, he is healthy in all other ways but his eye brows have been affected. Ways we found to cope with his hair was remember to always treat it gently ie We would not rub it when wet, just pat dry, also dont use a hair dryer use less on really low setting ie cold and reduce the amount of hair products we put on it, only used on special occassions. Some suggest a satin pillow to stop the rubbing at night which breaks it. Also we have moved around hair dresser until we have found one that knew about Pili torti and had cut it before as he can not have a trimmer use, it must be a scissors. Children accept it as him and only at age of 9 did we tell him about it been different, as a bit of teasing went on. But now with Secondary school he is classed as a cool due as does he use a straightener... like do they know it comes oh natural when I spray a conditioner on each morning.. aqua light just from super market. But sorry to say they dont real know answer to fit it and they do say as they get older it can improve.
My 10 year old was diagnosed with pili torti when she was 5. There was relief to finally know exactly what was going on with her hair, but the feeling of such helplessness came with the diagnosis. "No real treatment" Dr. Caputo says.... ugh! What!?! Honestly, what girl doesn't want long hair!? It's incredibly heart breaking, so I understand how you feel. We've tried different products hoping to find something that could help. I must say that Aveda helped. (Loved the girls at Town Center Mall lol!) We used a few products, mainly the from the dry line. But it really helped thicken her hair. We then switched to Ovation, which really helped for the first cycle. I'm not as impressed with the Ovation now. So, we may go back to Aveda for a while. I think switching the 2 back & forth might be a great idea! I hope this helps a bit. There aren't many with pili torti so it's tough. Good luck
Hey everyone! When I was about 1 year old, I was diagnosed with Having Pili Torte. I have hair past my shoulders now and have even had it down past the middle of my back when I was in high school. So please don't worry that the hair will not grow, because it will. I have tried MANY different things with my hair and for a long time I used to scrunch it with hair gel or hair creams and used a diffuser and created some fun wavy curls. I always would get compliments on it and thats funny because my hair can look REALLY bad if i let it!! LOL!!I also am able to flat iron it now and make it look pretty normal surprisingly!! I always always always use a deep moisturizing mask and add morrocon oils as well!! Leave in conditioners are very good to use too! My brother was also born with puli torte and he just keeps it short....works well for him. Just wanted to give you pili torte moms hope....