Mackenzie Smith, My name is jessica, I wanted to let you know that my brother and I were both born with Alopecia. If you ever want to talk I am here for you.
Jessica

Hi Melanie,

I am so glad to find someone else that has a child that was born with Alopecia. My son is 9 and was also born with the absence of head hair and it has never grown. I have spent hours upon hours researching the topic of Alopecia and traveled NW to see specialist. We were told that it could be alopecia or it may be a genetic disorder similar to Ectodermal Dysplacia, in which case he just has one of the symptons...absence of head hair. We were fourtante becuase if he does have a form of Ectodermal Dyssplacia it can have some other serious side effects. We were told to determine if it is ED we would have to have genetic testing and to determine if it is alopecia we would have to have a biopsy done on our sons head, which we elected not to do because it would not determine for sure if it is and we did not want him to have a scar. Have you been told that it is alopecia for sure, without a biopsy? I am curious because our dermetoligst have told me that would be the only way to determine it for a child born with alopecia and I am wondering if this it true. I understand your frustration with the "is your child ill"? My son is older (9) so I have actually had an adult ask him directly if he was going thru chemo...it drives me crazy. I was told by a dermetoligist at UCLA that there are only 5 reported cases of children born with alopecia, I found one other person so we just have to find the other 2...lol. My son is very well adjusted and even commented last year, when we planned on trying a steriod ointment, that he was worried it would work because he didnt want to look different since everyone already knows him the way that he is. I do worry, a lot, about how it will effect him in his teen years. Right now he is extremly involved in school functions, sports and plays piano. I know what puberty can do to a child not dealing with any other issues so I want to try to educate myself and plan ahead as much as possible. My prayers go out to you and your daughter please send me a message if you would like to talk, I'd love to learn more about how you have been dealing with your daughters alopecia. I welcome any adivce that I can get! Thanks

Hi Melanie,
My daughter is also 4 (turns five next month). It's a hard topic to discuss w/ preschooler's. We decided to take Kendall's lead and reinforce how much we love her head..with or w/o hair! We've actually started getting used to seeing her bald & although she is starting to have visible success w/ our current treatment, we keep her in check by reminding her there is a good possibility her hair can fall out again when treatment stops or at any given time in the future. Your circumstance is a bit different, but I think the message we give our children remains the same. We love them regardless and we want them to grow up to be the best adults possible. Continue your love and support and hope everything else follows. I look forward to getting to know you & MacKenzie!

Congrats on finding Alopecia world my daughter also has alopecia totalis. She is confident litte girl as I am sure you find that your daughter is as well. Great also to see someone from eastern Canada with a young daughter. Welcome!!

Hi MacKenzie and Melanie,
How are you and your daughter doing? I just wanted to say hello and welcome!
LeslieAnn

HI M&M :) I wanted to welcome you to Alopecia World. I can honestly say that we are a great community here and I hope you enjoy the time you spend with us and we look forward to your input. Cheryl, co-founder