Year: 2013

CAP5K, Walk and Family Fun Day

CAP5K, Walk and Family Fun Day

To register online please visit https://www.pretzelcitysports.com/onlineform1.php?id=426  and for directions to the facility go to www.BerkshireBaseball.com

5K, 1 Mile Walk, Fall type activities and live music (Weather Permitting) for the whole family to enjoy!!

Alopeciapalooza 2013

Alopeciapalooza 2013

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Alopeciapalooza 2013, a set on Flickr.

Instead of typing words on this blog I will just let the photos from Alopeciapalooza 2013 in Lawton, Michigan speak to you!

It was a blast and thank you for coming and if you could not attend you don’t want to miss next year!!

Jeff Woytovich, Founder
Children’s Alopecia Project

Riding the Waves of Life and Alopecia

Riding the Waves of Life and Alopecia

MADDIE.KIAWAH ISLAND

The time: January 2004

The scene: Kiawah Island, SC

A mother and father have driven 10 hours with their three daughters ages 6, 5, and 3 to escape to the beach  for the weekend.  Their middle daughter Maddie was recently diagnosed with alopecia.  They are distraught and heartbroken, worried for her future.  As they walk on the beach on a cold wintry day, Maddie is wearing a baseball cap, and the wind keeps trying to blow it off of her head.  “Take it off ,” her dad says, “There is no one here but us.  No one will see you.”  Maddie keeps walking holding onto her hat so the wind can’t blow it off.  The couple talks quietly about what is best for their daughter.  Should she take her hat off? Does it really matter?  Their conversation, they both realize, is not just about the possibility of the wind taking her hat; it is about her future.  Her dad, ever persistent, suggests again that she take off her hat, and as he grabs his camera, Maddie whips off her hat in a sudden moment of bravery.  Her mom tears up, and her sisters hardly notice, as her dad snaps a picture.

 

maddie surfing

 

Flash forward: August 2011

The scene: Wrightsville Beach, NC

A mother and father have driven 10 hours with their four daughters ages 14, 13, 11, and 7 to attend a surf camp.   Maddie, more than the other girls, is very nervous about learning to surf.  She was texting her friends on the way to the beach telling them she did not want to surf; she was going to make a fool of herself.  Why were her parents making her do this?  A few hours later Maddie and her sisters are surfing.  Dad snaps a picture of Maddie catching a wave.  She later says, “This was the best day of my life.”

Life is hard.  We all have obstacles to overcome, and we are all scared as these challenges come barreling down like waves attempting to knock us off of our feet.  Sometimes it feels like we are standing still, and sometimes maybe we are.  Sometimes we move forward in slow motion.  Other times, we catch a wave and ride it for awhile.

When I saw this picture of Maddie holding her hat in her hand in front of the ocean, I was immediately moved to tears.  I remember that day so vividly: the cold air, the damp smell of the beach on our clothing, the girls wishing for a better beach day.  Mostly, I remember that we were scared and unsure of what to do next about Maddie’s alopecia.  I felt like we were standing still.

Today this picture speaks volumes to me about just putting one foot in front of the other and seeing where it will take you. Looking at this picture, the memories and feelings attached, I can’t believe how far we have come.

“Should I suggest that my daughter wear a wig?”

“Should I suggest that my daughter wear a wig?”

maddie hat Question: My daughter Gracie is 3 ½.  She doesn’t quite realize yet that she has alopecia, but I am worried about her self-esteem. She is getting older and I know any day now she might look in the mirror and start wanting to know why she is missing patches of hair. I believe she is starting to know something about her hair isn’t right. She’s been making comments like, “I want long pretty hair like mommy’s,” “I don’t like my hair,” and “Why can’t my hair be put in a ponytail?” She is extremely smart and loves getting ready for school, doing all the girly things. I’m doing everything for her as if she doesn’t have a hair loss problem, but I really want to be prepared for the day when she starts asking questions.  Once the day comes to actually tell her she has alopecia areata, if she takes it badly, I was thinking about bringing up the subject of a wig. Is she too young to wear a wig? Or should I wait on the wig and try another way to help her? If you think I should wait and try a different solution, what would you suggest?

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Ashley, Buffalo, NY

 

Answer: There are many varying opinions about the subject of wigs and hair systems, but I definitely think that Gracie is a little bit young for a wig.   Maddie was 5 when she first started to lose her hair.  My husband and I were so worried about Maddie being bullied or teased that in addition to wanting to try every treatment we could get our hands on, we also encouraged her (naively) to wear hats and bandanas in the beginning.  Unfortunately, we now think we caused her to feel like she needed to cover up.  But then one day it all came to a head because she was playing an indian in a play and didn’t want to wear a hat or bandana under her head-dress.  So my husband suggested going in to school and talking to her kindergarten class.  He ended up talking to the whole school, and the response was incredible.  She received and still receives (9 years later) much support from her school, classmates, and parents.

When she was younger, she had a few wigs, which she enjoyed playing with, but she goes “bald” everywhere and holds her head high.  People respond well to her sense of self-confidence. When asked about her wigs a few years ago, she responded, “Sometimes I use them as accessories, like hats and scarves and jewelry.”  And today, she wears lots of accessories, but she chooses not to wear wigs.

The most important advice I can give you (and I can tell that you know this already) is to remind your daughter every day that she is beautiful with or without hair.  We all have different limits as to what we need to do to feel certain that we have turned over every stone.  I often say that when there is a cure, we will be first in line, but in the meantime, we want Maddie to know that she is beautiful with or without hair.  I am not against treatments or wigs or even covering up, but I fear that sometimes they get in the way of acceptance.  There may come a time when your daughter asks you about a wig, but until then I would not suggest it. Let it be her idea or she might get the idea that you want her to wear a wig.

Keep your chin up, and please let me know if there is anything else I can do for you.

“My daughter is 11, and all she wants it to fit in.  I know her alopecia makes her feel different.  How can I help her?”

“My daughter is 11, and all she wants it to fit in. I know her alopecia makes her feel different. How can I help her?”

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Question: My daughter is 11 years old and has AA since she was 2. She is having a hard time now that she going to a junior high school. She is ok with her school, but she is getting depressed and I’m very worried. She wants to fit in, and to just be herself, but she is scared and confused. The school community, teachers and kid all know about her alopecia. We sent an email explaining the condition, and she has not been bullied or treated different, but she feels out of place and in constant pain. It is hard to see your kid with so much pain.  Any advice would be most helpful.

Irene, Los Angeles, CA

Answer: Irene, I am so sorry for what you and your daughter are going through. I know it is so hard to see them in pain. I want you to know that it sounds like you are doing everything right-everything my husband and I did. You have educated the school and community about your daughter’s alopecia, and your genuine concern about her is both normal and admirable.  Try not to worry so much. Eleven can be a tough age especially when you are concerned about fitting in. I have a 12 year old daughter who has the same concerns, and she does not have alopecia. I want to tell you that while you are right that Maddie is doing very well, she also has her days and moments just like any teenager. One thing about Maddie though that is different is that she does not try to fit in. She is very creative and artistic where her sisters and close friends are more athletic and involved in sports. Maddie marches to the beat of her own drum. She doesn’t try to be something she is not for the sake of popularity. She embraces her differences.  Is there something that your daughter excels in, a sport, or an art, academics maybe? I would focus on that. Help her find what she is good at — what makes her different in a good way. And just support her. Remind her that she is beautiful with or without hair. That is so important, and I can tell you are already doing that.  It would help her also to meet other kids with alopecia and to know she is not alone. Please let me know what else I can do to help.

“My family is devastated.  How can I help them when I am so upset myself?”

“My family is devastated. How can I help them when I am so upset myself?”

Question: I have a 5 yr old daughter that just started losing her hair about a week ago. The dermatologist said it was alopecia so I have been reading everything I can find on it. I am trying to cope with the fact that my baby girl is losing her hair which is not an easy thing to do. She has 3 older siblings how do I go about explaining it to them? I have been trying but her big sister that is 8 is taking it especially hard! Any advise would be greatly appreciated!

~ Heather

 

Answer: Sometimes having a child with alopecia is more devastating for the parent than the child.  I think it is important that you find support for yourself too. I was devastated when Maddie was diagnosed, but she is okay, and your daughter will

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be too.  It is important for her to know that you think she is beautiful with or without hair and that you believe everything will be okay.  I know that is hard right now, but try to take it one day at a time and to put on a happy face for your daughter.  She will take great comfort in that, and you will start to feel better too.  I don’t know if you’ve ever heard the saying, “Fake it until you make it.”  A friend gave me that advice when Maddie was first diagnosed.  I was honestly angry at first, but she was right, and her advice helped me.

I understand that your other children are taking it rather hard too.  Having a child with alopecia affects the whole family.  My oldest daughter, Helena, is just one year older than Maddie, and she took it hard too when Maddie was diagnosed.  She was in first grade at the time and was overwhelmed by everyone’s concern actually.  I think the same advice I am giving you would apply to your other children too.  Do your best to set a good example for them that you believe everything will be okay and maybe even tell them that they need to be strong for their sister, that if they have concerns or worries to bring them to you to talk about in private.  My children felt empowered to stick up for Maddie when they saw someone staring.  One of my girls, Sofie, was only 3 at the time, and was very defensive of Maddie.  She would tell strangers, my sister has alopecia, but it is not contagious, etc. She mispronounced alopecia and contagious, but her message was still loud and clear, and she felt better knowing she was helping.  I can assure you that, with your support, everything will be okay.  If you take that stance early, your daughter will benefit and be reassured by your bravery and strength.
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