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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?”

maddie1

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.
“I feel so helpless.  What can I do to help my child who is losing his hair?”

“I feel so helpless. What can I do to help my child who is losing his hair?”

Maddie, age 9
Maddie, age 9

 

Maddie, age 14
Maddie, age 14

Question:

I want to raise my son to be proud and bold, and amazing and strong. And sometimes I fear that he will have a hard time — I know he will. And, because of his alopecia universalis, I worry.  What can I do to help him?

Millie, Montreal, Canada

 

Answer:

(I wrote this when Maddie was 9!)

Sounds like you’re on the same page with us at CAP in focusing on your son’s self-esteem, more than a cure or treatments.  I can tell you’re on the right track!  My daughter is 9 and has au too.  She’s had it since kindergarten and has only had regrowth once (in first grade).  I worry about her too, but over the years I have found that by focusing on her self-esteem and making sure she feels “normal” (Who’s really normal?), she is really turning into a neat kid who doesn’t let her alopecia get her down.  She has her days of course, but who doesn’t, and those “days” aren’t usually related to her alopecia.  We treat her just like our other 3 daughters, and she is busy with sports and other activities.  It wasn’t always this easy though.  In the beginning my husband and I cried (sometimes in front of her).  We bought her hats and bandanas, her grandmom knit her hats — we just wanted to “cover it up” but then we realized that we were making her feel like something was wrong with her.  Now she walks around “bald as a bean.” She has a wig, but she tells people it is “just an accessory” and it truly is: she wears it when she feels like it.  So, my point is that this whole alopecia thing is a process, and it sounds like you are on the right track.

Today, Maddie is 14, and I am amazed at how much of what I said 5 years ago is still as true as ever.  Maddie is brave and strong, and now that she is in high school, our “process” of raising a child with alopecia continues.  Maddie still has good days and bad days, but her bad days are rarely about having alopecia and usually about having too much homework or not enough free time or about her sisters getting on her nerves.  The process will continue when she starts college and so on and so on.  But we just keep taking it one day, one month, one year at a time, just like we do with our other children, just like you do with your CAP Kid and other children.  “Keep calm and carry on…..”

Betsy, Executive Director, CAP

“Will my child lose all of her hair?”

“Will my child lose all of her hair?”

So often, I am asked questions that I remember asking or wanting to ask someone who had a child with alopecia.  Through this blog, I hope to use my experience to help those with the same questions I once had.  If you have a question, please email betsy.woytovich@childrensalopeciaproject.org.  
Question:
I am wondering if/when we should expect total hair loss?  Once your daughter was diagnosed with AA, how much time did she have until she lost everything? My daughter is only 2 and just lost her first patch.
 maddie blog
 ~ Christie, Chalfont, PA
 
Answer:
Maddie never had patchy hair loss. From the beginning, her hair line receded and her part grew wider and wider until she had what looked like male pattern baldness, with about 70% hair loss.  Then her hair all grew back, and she had one spot for a few months until, rapidly, it all fell out again the following year.
It is most important to realize that alopecia is a very unpredictable disease and that each and every case is different from the next.  I tried to find patterns and things to figure out what would happen next, but I now have spoken to hundreds of people with alopecia who each have a different story to tell of their diagnosis or their child’s diagnosis.
If your daughter has only lost one small patch of hair, I would not assume the worst.  I know it’s hard, but try to be patient and hopeful as you wait to see what happens next.  What we try to teach our CAP families is that with or without hair, with your support, your daughter can live a very full life.  Hair loss doesn’t make her future any less promising!!
~ Betsy, Executive Director, CAP
All Because One Little Girl Lost Her Hair…

All Because One Little Girl Lost Her Hair…

Today, almost nine years to the day since Jeff spoke to Maddie’s kindergarten class about her alopecia and differences, he spoke to her entire high school student body and faculty about the very same thing.  It was somewhat nostalgic.  His reason for giving the talk was the same as before: Maddie still has never been bullied, but she was feeling like people in high school who she had not met before wondered why she was bald and even assumed she had cancer.  Just like in kindergarten, she asked her dad to intervene and talk to her school, to make sure they all understood that she has alopecia, not cancer.

This time, Jeff also talked about CAP and the families that we are blessed to know and help through CAP.  As pictures of our CAP families and Alopeciapalooza flashed across the screen, Jeff talked about our journey with alopecia and how it led to CAP and Alopeciapalooza.   He explained to the engaged student body and school faculty about how sometimes something we may see as a flaw or a difference in ourselves can lead us to discover new worlds, to find out something about ourselves that we otherwise might not have found–a talent, a skill, even a friendship or group of friends.

Especially at Thanksgiving, I am reminded of the story of Squanto and how his journey led him to help so many.  Did you know that Squanto was kidnapped from his village and spent three years in New England working as a servant?  He was desperate to get back home to his tribe and finally after 10-12 years, Squanto was finally able to begin his journey home.  But when Squanto went to where his village used to be, his family was nowhere to be found. He later learned that a great sickness had struck his people, and everyone had died. He was the last of the Patuxet tribe. Squanto lived with the Wampanoag tribe until he heard that the white men were building a city nearby. The year was 1620 when the Pilgrims arrived.  Squanto taught the Pilgrims how to farm. He taught them how to plant Indian corn and other vegetables. He also taught the women how to cook the corn. Squanto helped Pilgrims to make friends with other Indian tribes.   He was such a great help, William Bradford declared him a special instrument sent from God to help them survive.  If Squanto had not been there to help the Pilgrims, it could be possible that none of them would have survived.  If Squanto had not been kidnapped years earlier, history would have been rewritten.

Sometimes life throws us curve balls.  Difficult situations often seem pointless, and we can’t help but wonder why did this happen to me.  When Maddie was diagnosed with alopecia, Jeff and I certainly wondered why it had to be her.  But sometimes, something wonderful can come from something scary and life-changing.  During the Q & A after Jeff’s talk, a fellow student asked Maddie if she could grow her hair back tomorrow, would she want to.  She answered honestly, “I don’t know” and went on to explain that if it hadn’t been for her alopecia, she never would have met so many friends, been to so many places for Alopeciapalooza, met the Yankees.  And if it wasn’t for Maddie losing her hair in Kindergarten, Jeff would never have founded CAP and started us on this wonderful journey of being able to use our experience to help others.  CAP is a blessing to our family.  We are thankful for each and every one of you who have been put in our path.  We are so grateful to be part of such a wonderful family that we call CAP.

Happy Thanksgiving to our extended CAP Family!

Sincerely,

Betsy and Jeff Woytovich

 

CAP Kids are the Best!

CAP Kids are the Best!

I think the video speaks to why our passion is so great!

It’s not my CAP, it’s our CAP and we all wear it!

Please share this video with everyone you know 
and on every social media site you belong!

http://video214.com/play/TZi3V0cGNMQKkS1IlctsAA/s/dark 
Our Alopecia Journey: From Diagnosis to Acceptance

Our Alopecia Journey: From Diagnosis to Acceptance

My memories of Maddie’s diagnosis are a series of events blurred together like a documentary: First, I am brushing my five-year-old Maddie’s hair, and it is becoming harder and harder to cover her widening part; I flip her part from one side to the other, but either way it is still obvious that her hair is thinning. Fast forward a few days, I make an appointment with a pediatric dermatologist in Hershey and immediately burst into tears on the phone. I am baffled by my emotion. I myself have alopecia areata; I get coin-sized bald spots from time to time, but it’s never been a terribly intrusive condition. Later, I realize this must be what they call mother’s intuition. A few weeks later I take Maddie to see Dr. Miller in Hershey. The nurse gives me pamphlets about alopecia that depict people with absolutely no hair. I am appalled. Why would I need these brochures? Maddie isn’t going to lose all of her hair. In hindsight, it’s as if my intuition knew what my mind could not comprehend: This is going to get a lot worse.

About two months later, Jeff and I take Maddie to see Dr. Miller for the second time. Her hair loss has progressed, and she is now missing over 50 percent of her hair. I will never forget two things Dr. Miller tells us this day. First, he explains that Maddie’s case has gotten progressively worse, and this is not a good sign; she will probably continue to lose more hair. Then he tells us that having both of her parents come to the appointmentis a very good sign; she has supportive parents and we will get her through this.

Jeff always talks about the drive home from Hershey that day. That’s where his memory of this journey begins. We drove for a few minutes in silence unsure of what to say as our five year old, seemingly unaffected, played with toys in the back seat. When Jeff realized I was crying, he, the more emotional of the two of us, had to pull over. Maddie’s future or lack-thereof flashed before our eyes as we wondered whether or not she would have friends, do well in school, fall in love, get married, or to the contrary if she would live with us forever never reaching her full potential. Once we’d shared every negative thought imaginable (whispering of course), Maddie looked up from her toys and asked, “Why are you guys crying?”

I would like to say that from that moment on, we were strong and brave for Maddie’s sake, but it wasn’t until a few weeks later, when I got choked up at a school event, that a friend told me what I needed to hear, “I know you’re upset, and rightfully so. But you really need to suck it up when Maddie is around. You don’t want her to see you cry.” I may not have been ready to hear it at that moment, but that was the best advice anyone has ever given me, and eight years later I replay her voice in my mind sometimes, and even offer her same advice to others with newly diagnosed children.

For weeks Jeff and I had been buying Maddie bandanas, hats, scarves, anything to cover up her baldness. We thought we were doing this for Maddie so she wouldn’t have to deal with the pointing and stares and the comments, but in retrospect, we were also doing it for ourselves. When Maddie had her head covered, we could go on with our lives almost as if everything was fine. Like a band aid, the hats and bandanas covered Maddie’s baldness so we didn’t have to think about it or deal with it.

One night, Maddie’s babysitter told us that Maddie had worn her hat to bed. It wasn’t a particularly cold night, and I began to wonder if we were sending Maddie the wrong signal. Were we making her think that there was something to be embarrassed about, something to hide?

A few days after my friend’s comment, Maddie came home from school with a concern. The next day was the kindergarten’s Thanksgiving play, and Maddie was a Native American Indian. She had to wear an Indian headdress and worried how it would look to wear her usual bandana under her headdress. I was about to say, “Why don’t I call Mrs. O and see if she can switch you to a pilgrim?” when Jeff interjected, “Why don’t you just not wear the bandana?”

I thought he was crazy and insensitive, but feeling the importance of the moment I didn’t interrupt. Maddie didn’t need much persuasion, and when Jeff offered to go into her classroom and talk to the kids about alopecia, Maddie quickly obliged. It was as if she had wanted this all along. The next day Jeff spoke to the kindergarten class, explaining that having alopecia is like having a booboo and that Maddie’s body thinks her hair is a booboo so it mistakenly fights it and causes it to fall out. When Jeff was finished talking and Maddie took off her bandana, the kids were more interested in showing Maddie’s Daddy their booboos than in looking at Maddie’s balding head. The Thanksgiving Play went off without a hitch, Maddie was a Native American Indian, and from that day forward Maddie opted not to wear her bandana to school or anywhere else.

Making the decision to encourage Maddie not to wear her bandana to school that day and to ultimately let her decide how she wanted to handle her increasing baldness changed Maddie’s life forever. Maddie’s baldness is an afterthought, something you tend to forget when in her presence.

Of course as a mom, I continue to worry about her. When Maddie was in third grade, I asked her teacher how she was doing in class, how she was handling everything. She looked at me as if she didn’t know what I was talking about, and when I mentioned alopecia, she said, “I honestly forget she is bald sometimes.”

Today Maddie is a 14 year old girl who just started high school. She is smart, beautiful, popular at school, and most of all she is happy. She plays tennis and dreams of being a fashion designer or stylist some day. Oh, and she is completely bald.

Maddie’s First Day of High School

Maddie’s First Day of High School

I had been thinking and worrying about Maddie’s first day of high school all summer. Heck, I’d been thinking about it for years. Maddie, like her sisters, was fortunate to attend a very small catholic elementary school — grades K through 8. Maddie was diagnosed with alopecia in October of her kindergarten year at Sacred Heart, so the 12 kids that she graduated from eighth grade with did not remember her with hair. I would like to say they were protective of her, but it went deeper than that. They didn’t see any reason to be protective of her–she was just Maddie. Silly, artistic, smart, sometimes clumsy, always friendly Maddie. I got the feeling if Maddie’s classmates were asked what her hair color was, they might hesitate because it barely resonated with them that Maddie was bald.

Maddie’s eighth grade graduation night was surprisingly emotional for Maddie, her Dad, and me. The unspoken thought among the three of us, “Why do we have to leave our safety zone? Everything here is perfect,” caused us all to feel heavy-hearted, nostalgic, even frightened.

It was not as if Maddie was going on to a huge high school. Berks Catholic has about 200 freshman, but going from a class of 12 to a class of 200, from a school of 150 to a school of 750 was a huge jump, especially for a girl with no hair. Maddie had her 12 classmates and a few other students she knew from some of the other feeder schools. She had her older sister, Helena, who is a sophomore, and all of her friends. She joined the tennis team, which was another huge advantage to starting fresh in a new school. Helena and her friends and the girls on the tennis team were very welcoming and encouraging to Maddie as she prepared for her first day at Berks Catholic.

As we approached the school on the first day, Maddie was a little nervous, as any freshman would be. In the car line, she saw that her best friend, Devon, was only a few cars ahead of us. She urged me to “catch up.” We watched Devon disappear into the doors of the school, but felt content knowing she was in there surely waiting for Maddie.

As Maddie got out of the car, I couldn’t help but notice a girl in the car in front of us. She was blatantly staring at Maddie. A freshman herself, she was probably not intentionally staring and was possibly even nervous herself, but she wouldn’t take her eyes off of Maddie. I was flooded with emotion as I watched my summer nightmare unfold before my eyes. For nine years, I dropped Maddie off at a school where she didn’t have to worry about bullies, starers, questions, or comments. How was she going to handle this?

Just as I was about to jump out of my car and take her back to eighth grade where she would be safe and secure, I saw a second girl get out of the same car. It was Lynn, who was also a freshman on the tennis team. I watched her mouth, “Hi Maddie,” and the three girls walked into school together. I choked back my tears and realized that even though my biggest fear had just become a reality, Maddie had been unscathed by it. She hadn’t even noticed the starer, and she was fine. She was going to be fine. She is going to be fine.

A few weeks have passed, and just yesterday Maddie told me that a new friend of hers had passed her a note saying, “I am sorry you have cancer; I am here for you.” Again this is a scenario that I didn’t want Maddie to have to encounter. But once again, Maddie handled it. She explained to the girl that she had alopecia, and, of course, her friend was relieved.

I really think that Maddie is going to be fine.

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