Amazing teen inspires with radio show and non-prof

Jun 13, 2012
Children react differently when they are affected with Alopecia. In addition, when children write down or draws pictures about their true feelings on paper, this is when parents are able to understand the mental impact. Education about the various categories (over 75) of Alopecia still needs to be showcased to society, thru print, social, television medias and educational seminars. We interviewed Betsy, Jeff and Madison Woytovich, who created the Children’s Alopecia Project Organization to help children diagnosed with Alopecia. You will also learn how a brave 5 year old tells her Alopecia story.

Who is Madison Woytovich? Madison is an amazing 14 yr old teenager! At the young age of 5 when first diagnosed with alopecia, she has proven that anyone can enjoy a full quality of life without hair. She has her own Radio Show! Madison is smart, and on a mission. Many times an unwanted situation may be turned into a passion for awareness. Her radio show allows her to use her voice to make her mark, which includes a variety of topics and guests.

We will begin with what is Alopecia? Alopecia is the medical term for hair loss, which currently affects over 80 million American of all ages and races. We have found a few common categories in children. These categories include: Trichotillomania, Telogen Effluvium, Alopecia Areata, Alopecia Totalis, Alopecia Universalis, Congenital Alopecia, Drug-Induced Alopecia, and Wind Damage Alopecia just to name a few.

Q. Betsy & Jeff, from a parents prospective, was Madison’s diagnosis a challenge for you?

A. It really was. We were devastated. Jeff tells the story of driving home with Maddie (age 5) strapped into her car seat behind us. We were crying so hard that Jeff had to pull over. We imagined a life of loneliness for Maddie: That she would never have friends, get a job, get married. We were worried sick about her future.

Q. Betsy & Jeff what would be your advise to parents whom have children diagnosed with Alopecia?

A. Have your moments of devastation, but eventually, as soon as possible, you need to come to acceptance and move forward. Your child can live a perfectly full life with or without hair. Don’t let your child see you upset. And, most importantly, let your child make his or her own decisions about whether or not they want to seek treatment or wear hats or wigs. If you are suggesting they wear a wig or hat or scarf, you are inadvertently telling them to cover up their baldness, that you are embarrassed by it. And if you are seeking treatment after treatment, you are telling them that something is wrong with them that needs to be fixes. It is a parent’s instinct to want to help their child in any way possible, but we as parents have to let our children lead the way regarding how they want to handle their alopecia. And we have to let them know that we think they are beautiful (or handsome) with or without hair.

Q: Madison will you please tell us when you first received your Alopecia diagnosis?

A: I first received it when I was just 5 years old with alopecia totalis beginning kindergarten in about late October 2004. I had lost about 80% of my hair within 30 days in June 2004. It started growing back, then a bald spot appeared in my front hairline in August 2004. It progressed, and by thanksgiving I lost it all over my body. I have had Universalis since that time.

Q: What type of Alopecia were you diagnosed with?

A: I was diagnosed with totalis, but now I have Universalis

Q: What type of treatments were recommended for you and were they effective?

A: I had this one bald spot that I got injections in, but then the rest of my hair fell out and it just grew in that spot! I also took pills and put oils and creams on my head, but nothing worked and I didn’t like it, so we stopped with treatment.

Q: How did this diagnosis affect you at school?

A: Well I wore hats and scarves to school but one day I was in a thanksgiving play and had to wear a feathery head band since I was an Indian, so I didn’t wear my hat that day and my dad talked to my class and everyone took it very well! I go to a catholic school, so I’m still in the same class as the kids my dad talked to in kindergarten so they don’t really know me any different!

Q: Did you like wearing wigs, caps, or scarfs?

A: I occasionally do wear wigs around the house, but when we leave, I put it away, and my mom can never get me to wear a hat when it’s cold, I just like going bald!

Q. What/Who helped you the most with coping with your Alopecia?

A: Probably my parents. They gave me the option of wearing hats or going bald and I think that made a big influence on my life because if they just covered my alopecia up with hats and scarves, I might have been still wearing them today!

Q: Why did you decide to start your own Radio Show?

A: When given the opportunity I said ABSOLUTLEY! I’ve always wanted to know how other people feel because I am obviously fine with being bald, but many people aren’t, so I like hearing their experiences and sometimes I can even help! I don’t just interview people with alopecia, I can interview anyone!

Q: Please tell us about C.A.P and the annual event that is hosted.

A. CAP; or the Children’s Alopecia Project, is a non-profit that helps kids self esteem and confidence. We are not trying to try to cover their alopecia up, nor are we trying to search for a cure, we are strictly about self esteem, and helping kids a positive attitude! We recently had our 8th annual Spring Spectacular Silent Auction which is an auction and gala where we raise money so we can do all the fun activities that we have. This year, I spoke about my story for the first time, I was very excited for this, but sort of scared, but I felt less nervous then thought I would be because I was used to speaking through my radio show, so I think that really helped!

Q. Have any of the testimonials/experiences from other kids helped you in anyway?

A: Yes! There are many people that when they come to a cap meeting or camp for the first time they say it’s the first time that they’ve ever seen someone without any hair. That is hard to believe and I couldn’t imagine going through that experience again! Those kids are truly brave for coming and showing their alopecia to everyone. If you would see these kids, you would think that they are so comfortable with their alopecia, like they’ve met thousands of other people with no hair, when truly, they haven’t come in contact with anyone! I really look up to those kids.

Q: What advise would you give parents who have children affected with Alopecia?

A: Keep your head up high for your kids. If they see you suffering, they will suffer too. If they see you acting like it’s not the end of the world, they will feel the same way. Also, you always should tell your children that confidence is the answer to everything! Always be confident and even if you are upset about losing your hair, don’t show others at school that you are affected by it because that’s what bullies are looking for. If someone is confident and knows that they are beautiful, then there is no reason for someone to bully them! They will truly be unstoppable!

Q: If someone wants to contact you for additional information about C.A.P. how may they contact you?

A: through my website: you can email me there or comment on my blog! Hope I can help!

In our effort to assist children affected with Alopecia, a donation will be given to C.A.P. Organization in September as part of our Alopecia Awareness Cruise and Essay Contest 2012. Our essay contest is for children ages 6-18 whom are affected. 300-400 words on the Topic: “How Alopecia Has Affected Me”

The goal of our essay contest is to use it as a writing mechanism to assist parents with knowledge about the mental impact of Alopecia on their child/children.

Dr. Linda Amerson--Arlington Hair Care Examiner
Dr. Linda Amerson--Arlington Beauty and Hair Examiner