Replies to This Discussion

Permalink Reply by Melissa on March 10, 2009 at 4:40pm

Hi Nancy:

I haven't posted anything to you in awhile and I saw this message and thought I would respond. I know what you mean about the sadness. Somedays I don't even think about it I just see Emma and not her hairloss and then other days it seems like it is all I see and I too am sad. Emma however never seems to have a sad day. We are also in a regrowth period which helps as well... well see how long it lasts. I often tell myself that all kids have something that they struggle with even when it is not visible like Alopecia and this is not something that changes who she is and what she can become. Emma has started embracing that this is something God gave her for a reason and we just have to wait and see what it is. It's good to hear that Lauren is fine with just a do-rag playing Lacrosse. Emma does something similar for Ballet. I should talk with Emma again about trying to meet the two of you somewhere so the girls could meet. I think it would be good for Emma. If you recall we are in Mason, OH (North Cincinnati).

Melissa

Permalink Reply by Nancy Schmelzer on March 10, 2009 at 4:51pm

Melissa, It would be great to get the girls together and for ourselves to have a chat. What you said about having good days and bad sums it up. But Lauren, she is never sad about her hair, which is great. She has such a good attitude , i wish I could borrow it:) Hang in there too.

Nancy

Permalink Reply by Danielle & Lilly on March 10, 2009 at 9:22pm

Hi I am new to Alopecia world, however, I am not that new to having a daughter with alopecia. Lilly has had it for 3 years. Today was a really bad day for me. Just when I thought I finally got to a point where I was alright. I am hoping tomorrow will be better. Nancy, I am just so glad that I found alopecia world. Now I don't feel like Lilly is the only one out there with this. I hope tomorrow is a better day for you Nancy.
danielle

Permalink Reply by Nancy Schmelzer on March 11, 2009 at 7:18am

Thanks Danielle,
Like you we have been dealing with this since Lauren was in Kindergarten and now she is in third grade(3 years now). Today is a better day-so thank you
Nancy
ps hang in there

Permalink Reply by Donna Hakim on March 11, 2009 at 1:30pm

Hi Danielle - I have a little Lilli too - her full name is Lilliana but sometimes we call her Lilli. She was diagnosed at 10 months of age with AA. Lost everything in 2 weeks. How old is your Lilly?

Permalink Reply by Danielle & Lilly on March 11, 2009 at 5:15pm

Donna,
My Lilly is Lillian Rose and we call her Lilly for short or Lil' or whatever pops in our heads at that moment. :) She is 7. Lilly's hairloss has been a rollercoaster ride. Hair growth-hair loss. She has never been completely bald but she has no hair on her arms, legs, she only has one eyebrow and now is losing her beautiful long lashes. She probably has about 25% hair left on her head.