Anyone ever hear of Marie Unna Hypotrichosis? Desperate for any info

Hello parents just wanted to share my story and see if anyone has a similar one. My daughter as as an infant lost her hair and eyebrows around 5 months of age and her regrowth took long to come in. The regrowth was dark and wiry and coarse but her eyebrows are spare. Her hair is pretty thin but you couldn't tell because it is so "puffy" because of the texture and sticks up all over the place. We get lots of stares and sometimes comments. We met with the amazing ped. dermatology group at Columbia Presbyterian and also met with Dr.Christano. We are awaiting a diagnosis..but it is leaning towards Marie unna Hypotrichosis and most cases report complete loss of hair in the first decade of life. Has anyone ever heard of Marie unna?? I hate not knowing what will happen to her.

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Replies to This Discussion

Permalink Reply by Melissa Brunner on January 27, 2014 at 7:52pm
My daughter's four and lost of her hair, eyebrows, and lashes within three months. We changed her diet to exclude all sugar of any type, except ra organic honey. Also, but not limited to, any artificial preservatives and yeast of all kinds. She has been on the anti inflammatorydiet lHer eyebrows and lashes are back . a There is also soft white fuzz growing on the crown of her head. I hope this info is helpful. I will now look into Marie Unno, as we are unfamiliar but eager for any help into her recovery. I believe the problem lies within the gut known as disbiosos which created leaky gut syndrome. All help is appreciated. I wish you all love, light, and luck! -Allisons mom Melissa :)
Permalink Reply by Sara on January 28, 2014 at 10:22am

Melissa,

I feel the same exact way...I feel like it's all related to the gut and leaky gut syndrome.  Although I decided not to put Sydney on a strict diet like that but hoping when she is older she will do it on her own.  How does your daughter feel about such a strict diet or doesn't she realize?

Permalink Reply by StephaniePA-C on January 28, 2014 at 2:58pm

My daughter did not get this diagnosis but was diagnosed with AA around 11 months......though it was likely present since 6 months of age.  She is now 18 months and has about 40% hair loss. We started gluten and dairy free at 12 months.  She is FINALLY getting some regrowth in her very large patch in her right temple but she is still losing elsewhere.  The rate of loss has dramatically slowed.  I don't know if it is the diet changes? We did notice a significant change in her bowels almost immediately though one physician told us it could be her "growing up". I do not believe this however. She has mistakenly been given gluten and had loose bowels and constipation the next few days.  We also give her Nordic Naturals multivitamin and Nordic Naturals Omega 3.  I am so thankful she has not progressed at AT or AU. I don't know if these things are making the difference.  Prayers to you and your daughter. I understand what it feels like for people to stare.  We just ignore them and we do and say whatever we can to let her know she is beautiful.  She is so little is oblivious to it now. Just praying she stays that  way. 

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