Replies to This Discussion

Permalink Reply by BaldGirlsDoLunch.org on February 11, 2010 at 12:42am

It's a big change when our children have this condition and it takes getting used to . It's a process. And though it doesn't seem this way now, it can be turned into a huge positive in a child's life believe it or not. Parental anger at strangers as a strategy, though, will backfire. It's not productive for adults with alopecia either, but it can be a self fulfilling prophecy. People are mean and rude. I'll say something mean and rude to them. See? I told you they were mean and rude. Doesn't work.

Betsy and Jeff,parents of Maddie with alopecia and founders of the Children's Alopecia Project at CAP4U@verizon.net or childrensalopeciaproject.org are the perfect resource for you. Not only have they been through the same thing themselves, they are spot on to provide you information and ideas quickly. Yes, you can and should make some cards. You can also get the nice pamphlets produced by CAP to hand out.

Before long you'll have down the 10 second sound bite that says "thanks for your interest, but my son's perfectly healthy. He just has a skin condition that stops his hair from growing. Lots of people have it..you just might not realize it." It does get tiresome explaining to other people, but it just comes with the territory. There's no benefit to showing anger or impatience with other people. To do so sends a message to your own child that there is something to be annoyed about. Just make alopecia something that makes him special. " My son has something kind of cool about him. It's called alopecia areata."

You'll want to send a friendly note around to neighbors and classmates ..he's not contagious. He's not sick. CAP can help with sample letters.

Not sure I follow why your son's hair was cut if he wasn't complaining about it.

Thea
www.baldgirlsdolunch.org

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Permalink Reply by jackie estrada on February 11, 2010 at 12:58am

Thank you Thea for your response :) I will definitly be making contact with these resources! Ive talked to my older children and boyfriend about why we can not respond to these comments. The kids feel overprotective and dad just doesnt want people saying hurtful things in regards to Mikey. Ive told them if they respond it may make mikey think he is different. And as for his hair all his spots kept getting larger therefore combining together, and kept getting hair in his mouth. At this point I almost wish I hadnt due to the startes that occur. But Ive told myself its ok because he is a beautiful. Oh yeah he also has some hair growth on top it is minimal so im not sure what this means??? Im just hopefully for regrowth hes next appt is in 2 weeks.
Jackie

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Permalink Reply by Jen Deletto on February 11, 2010 at 8:26am

My daughter rapidly lost her hair very quickly when she was diagnosed. She has AA but has lost a substantial amounth of hair. She will be 5 at the end of this month. She goes to daycare and has been with the kids since she was 11 months old. She has commented to them, "I'm special because I am allergic to my hair." The other day she said a kid was picking on her and when I asked what she did in response, she said, "I told him that I am growing new beautiful hair!" Have you checked out the Children's Alopecia Project? Their website is www.childrensAlopeciaProject.org. They a have a ton of great information and resources for coping with this and dealing with the stares. Jeff and Betsy are wonderful!

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Permalink Reply by Mary on February 13, 2010 at 12:46am

Hi Jackie - I lost my hair as an adult, and can't know what it's like for a child or their parent, but I do print business cards at home that I hand out. I go out bald all the time, and frequently get stares or questions about cancer. Here's what my cards say (Side One):

"It's not cancer, it's not contagious
IT'S ALOPECIA AREATA

An auto-immune disease affecting 2%
of the population.

Thank you and have a nice day."

(Side Two):
"Check out my videos on YouTube
about Alopecia Areata:

Living a Bald Life

Announcing the National Bald Out!

National Bald Out 2009"

You might want to include the names of some other YouTube videos on your card. For example there are some great ones about kids with AA. One is by AW member Olivia Rusk. The National Bald Out 2009 includes some photos of kids with AA.

Good luck,
Mary

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Permalink Reply by jackie estrada on February 14, 2010 at 2:03am

thank you so much for your example! it helps to know that someone else had the same idea that i did.
Jackie

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Permalink Reply by Matt (Mikayla's Dad) on March 2, 2010 at 4:30pm

Jackie...

I feel your pain...so much so, that your post brought tears to my eyes once again. Our daughter is 12 years old, and has had Alopecia for a little over a year now. It started with a spot, and not there are just a few patches where she still has hair growing. My wife, my daughter and I have been on an emotional roller coaster this past year or so, and I would say that this is probably one of the hardest things that we've had to deal with. The sad thing is that people don't ask questions, and most of them assume that it's cancer or some other life threatening disease that's caused the hair loss. I will say that I'm am thankful every day that it isn't a life threatening disease, but that also doesn't make it any easier to watch your baby go through something like this and not be able to fix it. It is still hard, and we've been angry, sad, confused, hopeful...you name it, but I promise that it does get a little easier with time. The kids that are dealing with this are so strong!! We have learned so much from our daughter about personal strength through this disease...we're amazed every day what we learn from her. BTW...I think the business cards are a GREAT idea!! :o)

Matt

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Permalink Reply by jackie estrada on March 3, 2010 at 2:54am

Thank you Matt! I totally agree with you regarding the personal strength that our little love bugs carry!! Im amazed even at the young age of 3 mikey can understand whats happening to him. When I do cry in front of him he laughs at me and tells me not to cry cause he is gonna get his big hair back :( I can only pray that he does. These past few months have been a roller coaster of emotions. Im happy and singing one moment with my kids and the next im crying. But like you did say I am very thankful that my son doesnt have anything life threatening. My own way of getting through this with him is I havent changed the things that I do tell him. When I tell him did you know mommy loves you, and that your beautiful, he laughs and says I know mom you always tell me!! And yes it is extremly hard to not be able to FIX what is happening to him. I can only say that we were chosen for this journey and that God would not put us through anything that we cant handle :) So I know that all of us on here carry great strength, and have unconditonal love for ourselves, our children and all those around us, to be able to get through this. I have 6 kids and a multitude of family and friends and Mikey has been an example of HE IS STILL THE SAME but he has a condition that causes hairloss. And with this myself, family and friends explain to the kids not to stare or make comments because he does have feelings, too! And then they inturn explain to others about his condition. Thank you so much for sharing your journey with me. It gives me some insight to know how a daddy feels. :)

Jackie

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Permalink Reply by amanda ackroyd on April 27, 2010 at 5:53am

it is so sad that people can b that rude and stare at a 3year old like he is an alien, hope he feels better about himself now and realises that hes not the one with the problem, all u can do is make him feel special have a word with his teachers and see if she can arange a talk in his class to explain to his friends wot the condition is and that he is not ill its just that his hair is poorly. This should stop any wispering at school, and hopefully reasure him like he is the same as any one else

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Permalink Reply by Coreena Holmes on May 4, 2010 at 5:23pm

I Think a card would be GREAT!! My son is 8 and is completly bald with no eyebrows or eyelashes and I hate when people stare!!

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Permalink Reply by BaldGirlsDoLunch.org on May 4, 2010 at 8:30pm

You can get cards from ChildrensAlopeciaProject.org just send an email to their director Betsy at CAP4U@verizon.net

Children's alopecia Day was last month, April, but you can plan to do something special next April. They have very nice materials to provide for your friends and schools at any time throughout the year. And very cute awareness logo items. Their parents chat nights a couple of times a month are helpful. They will donate books to your child's school and provide ideas for age appropriate materials.

Thea
www.baldgirlsdolunch.org

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