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Comment by Monique (Mom) on August 24, 2009 at 8:32pm

Hi Jake. You should check out Children's Alopecia project. They are amazing. They can hook you up with tons and tons of kids like you. You aren't alone. There are a lot of amazing kids who look just like you. I met them at the convention in Philidelphia. It was called Alopeciapalooza. It was through children's Alopecia project. Amazing!!!! They are doing next year in Chicago. Email them and get more info.

Comment by Wendy Green on August 24, 2009 at 8:32pm

Has anybody been to a naaf conference? I am just wondering about what sort of activities they have for children, and what people thought of it. The conference next year will be fairly close to me and I would like to take my son, I would just like input from people who have been there in the past.

Comment by Jake on August 23, 2009 at 9:45pm

Hi everybody ! I am looking for pre-teens with alopecia..... my son is 12 and we do not know anybody in our area who has alopecia. He is the only one at his school of over 350 kids who has alopecia. I would love nothing more than to find some individuals that are close to his age so he will not feel alone anymore...Thanks

Comment by Monique (Mom) on August 23, 2009 at 8:09pm

Wow!!!!! Caroline. You have said everything, everything that I have been feeling and going through also. My baby was born with hair and lost it all at 10months. I too notice the stares and am very very very emotional about it all. She is only 16months now, so it hasn't been too long. She has Alopecia totalis...I guess. No hair at all, no eyelashes, no eyebrows. Nothing. I am devistated in knowing my babies future. I am so worried. I too am bombarded by stares, questions, looks, comments. I could seriously hurt people. I get so overwhelmed and wonder how she will accept this. I think therapy is great. I may look into this myself to help settle this for myself to help my baby. Great idea!!!! Hang in there. I know how you feel. Exactly. Would love to talk more if you want.

Comment by Caroline Kehoe on August 23, 2009 at 8:16am

Hello everyone. Im delighted to have found this group as the hardest part of my daughters condition is not having any other mams or dads in the same situation to talk to about the ups and downs of parenting a child with hair loss.
My little girl was born with the average amount of hair you would expect on a newborn baby but this all fell out over the next 2-3 months. Again this was not worrying as lots of babies lose their hair. It was only when she was still totally bald at 12 months that i began to ask questions. People were starting to stare and make comments and i found myself constantly watching peoples eyes and faces to see their reaction to my little girl and this was soul destroying. I felt wildly protective of her and would have gladly swapped places with her if i could. I couldnt believe how insensitive people can be and it her lack of hair began to take over my life. The doctors kept telling me not to worry and that it would grow but eventually a dermatologist confirmed that she had a very rare form of permanent hair loss called hypotrichosis of the scalp.I started seeing a therapist to deal with my emotions cos i didnt want her to pick up on my fears and worries. slowly but surely I am coming to terms with her condition and i suppose it helps that i dont have the expectation that her hair might someday grow back. she has scanty hair on parts of her scalp which we keep shaved as she now wears a vacuum hair prothesis and her eyebrows are scanty too. she does however have the longest eye lashes on her big green eyes! The last 5 years have been a rollercoaster of emotions for me as im sure you can all relate to!! Hypotrichosis is a genetic condition so there is a 25% chance of each of our children being born with the condition.....I am 34 weeks pregnant with my second baby so will know soon enough!!! Cant find any history of the condition in my or in my husbands family but it can skip many generations. I try to stay as positive as i can about her condition and try to remember that its not life threatening and could be so much worse but being human, there are days when i am worried sick about how she will cope and how others will treat her but i guess i wouldnt be a normal mother if i didnt have those fears!!
anyway looking forward to getting to know you all and hope i can be of some support to you too!
caroline xxx

Comment by margaret and nicole on August 23, 2009 at 7:48am

This site talks about the benefits of substances found in Apple Rooibus and Green tea. Anyone come across this before or know anything about this?http://womenshairloss.com--valuable.info/

Comment by Lisa on August 23, 2009 at 12:01am

I wanted to let parents know there are places that help children with alopecia. My daughter received a real hair wig from Children with Hair Loss. Also there is Hair Club for Children and they supply free wigs up until they are 18. There are other organizations too. Just so you dont pay thousands of dollars, look first. Her wig is awesome!

Comment by Lisa on August 22, 2009 at 11:58pm

his is Chandler's mom, Lisa. I read the blogs on here everyday, trying to learn something new and learning how everyone deals with this mysterious disease. Chandler is 10 years old and got a 2 inch patch about 5 months ago, 3-4 months later almost all of her hair was gone. We were totally shocked, in disbelief,confused, etc. We went to many different doctors and they all said the same thing, there is not much you can do about this. That part really amazed me. None of the doctors ever would try to think of something else, they would just say the same thing. I would be really impressed to find a doctor that said let's think about this disease and try to find a solution! Let's try a variety of things! Anyway, I can go on and on about the doctors in this country and how they do not explore or open their minds when confronted with a difficult disease.
Right when we found the 2 inch patch on Chandler's head, we investigated the disease ourselves. We stopped her allery shots, stopped her Singulair medication, reduced all stress, started taking hair vitamins and started applying Dithro-Scalp Cream (5%) and Clobetasol Propionate Foam (.05%).
After having alopecia for 5 months, her hair is growing back. The front of her head at the beginning of the hairline is still hairless but everywhere else, there is hair growth.
We are not going to get our hopes up yet. I have read that it can fall out again and usually does. But, so far, it has been growing for about a month and looking good. I just wanted to let everyone know and hopefully this can help someone. We will keep you posted.

Comment by Ellie on August 10, 2009 at 9:46am

We had a great time at Alopecia Palooza!!! My daughter Haley had fun and made sone new friends. Great!!! I can't wait for next year.

Comment by Monique (Mom) on August 9, 2009 at 8:46pm

Alopeciapalooza was amazing!!!!! If you didn't go this year, please, please try to go next! It was wonderful, wonderful, wonderful!!!!!!

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