Alopecia Awareness: Teen Author's Alopecia Story

May 15, 2012
Millions of children are affected with Alopecia due to various reasons. Because a large percentage suffer in silence, we would like to break the silence and let their voices be heard. Depression may become too familiar to parents, and they will search high and low for specialist to help their children. Education about the various categories (over 75) of Alopecia still needs to be showcased to society, thru print, social, television medias and educational seminars.

Who is Olivia Rusk? Olivia is a 14 yr old Trendsetter! She is a teenage author who is a smart motivational speaker on a mission. Many times an unwanted situation/condition may be turned into a passion for awareness. Her motivational speaking to her piers is targeted to improve self esteem, address bullying, and improve character traits. Olivia’s story is welcomed to create awareness.

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, Congenital Alopecia, Drug-Induced Alopecia, and Wind Damage Alopecia just to name a few.

Q: Mrs. Rusk, from a parents prospective, was Olivia’s diagnosis a challenge for you?
A: Olivia’s diagnosis was extremely difficult. I had never even heard of alopecia and was shocked that the medical community did not have answers to my questions. I wanted to know if Olivia would lose all of her hair or just the small spot that we first noticed. All I could get from the doctors was…… “Sorry, we can not answer that”

Q: Mrs. Rusk what would be your advise to parents whom have children diagnosed with Alopecia?
A: I would advise parents to reach out to other parents who have been through the same situation. When Olivia developed alopecia, there was hardly any resources available. I would have loved to be able to speak to another mom about it. We are also members of www.alopeciaworld.com, a free networking site for people affected by alopecia. We know the people who started the site and they are wonderful. The site is literally worldwide and you can communicate with people of all ages.

Q: Olivia will you please tell us when you first received your Alopecia diagnosis?
A: I began losing my hair when I was 18 months old.

Q: What type of Alopecia were you diagnosed with?
A: At first it was Alopecia Areata because I just had small spots of hair loss. But within 4 weeks I lost all the hair on my head, so I guess then I had Alopecia Totalis. Then most of my hair regrew, but when I was 8 years old I lost all of my hair on my head and all of my body hair, so then I had Alopecia Universals. Since then, I have some body hair and my eyelashes back. So I guess you could say that I have had all three types.
Q: What type of treatments were recommended for you and were they effective?   
A: When I was 2 years old we went to Riley Children’s Hospital and the doctor prescribed a topical steroid and Women’s Rogaine. Yes, if did work, but when my hair fell out the second time, I did not want to use the medication again.

Q: How did this diagnosis affect you at school?
A: Believe it or not, the kids in my school were okay with it. When I was 8 years old
I wore a wig for 5 months. I had to use a type of glue to attach it to my head and it was hot and itchy. One day, I woke up and told my mom that I was going to school that day without my wig. She was not happy and tried to talk me out of it. I felt like I was hiding who I was and was determined to not wear the wig. My mom came to my school and spoke to my teacher, the school nurse and counselor. My mom was upset and finally they told her to just go home, they would handle it with the other kids. They spoke to the kids in my class and explained what was happening. Nothing bad happened that day and I think it is because I am so confident.

Q: Did you like wearing wigs, caps, or scarfs?
A: I never liked caps, hats or scarfs. I only wore the wig for 5 months.

Q. What/Who helped you the most with coping with your Alopecia?
A: I don’t really know. I was just okay with it. Maybe it was because I developed alopecia when I was just a toddler and have had it since then. I am glad that I did not lose my hair for the first time when I was a teenager. It would have been much harder.

Q: Why did you decide to write your book?
A: I am a motivational speaker and have share my story with kids in schools through out Indiana. Kids really like what I have to say about bullying and they really seem to listen to me. The book is a way to share my message with more kids that I might not get to meet in person.

Q: Where do you see yourself in the next 3-5 years?
A: I hope to continue speaking and I am also interested in sign language. I have a scholarship to IUPUI and would like to use it to become a sign language interpreter.
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Q: Are you affiliated with any other organizations?
A. Our organization is Olivia’s Cause and we have an association with The Women Like Us Foundation. We also like to support Alopecia World and Locks of Love.

Q: What advise would you give parents who have children affected with Alopecia?
A: Support the way your child wants to handle their alopecia. My mom thought the best thing for me, was to wear a wig. She was shocked and concerned when I decided not to wear it. It took her awhile to really accept my decision.

Q: If someone wants to contact you to purchase your book, how may they contact you?
A: My book is “Just Your Average Teenager, Who Happens To Be Bald” and you can find out more about it and order the book on our website: www.oliviascause.org or at: www.oliviarusk.com You can also follow Olivia’s Cause on facebook. To contact her mother Sandy Rusk email her at sandyrusk@netscalp.net.
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