Living with Alopecia (Hair Loss)

A six year old with this thing called Alopecia

I know of a little girl that was victimized by this awful thing called Alopecia. She remembers the first day her mommy saw a small bald spot on the back of her head. Her mom took her to the doctor and they said it looked like ringworm, and it was really no big deal. After all, the little girl loved to play with stray animals and loved playing in sand and dirt (anything to get dirty).

A few days later, her mom noticed the spot was getting bigger and bigger, but the doctors still didn’t know anything. They told her mom that they would like to do a study and if it was okay they are going to send in some doctors to do an evaluation to see what the problem is. One by one the little girl saw over 50 doctors. After that one of the doctors came in and told the little girl’s mom that she had Alopecia. What!?! What is Alopecia? The doctor explained it’s hair loss – there is really nothing they know about it, and there is just a hand full of people that they know that have it. They said there is no treatment and that most likely the hair will come back in. That was it – nothing more and nothing less, you just have to see what happens.

Over the next month or so the little girl would notice hair her fallen out hair on the pillow in the mornings. Like any kid, she thought “no big deal,” just brushed it off and went on with the day. She couldn’t wait to get outside and play. One day her mom and her went to K-Mart, the little girl stood in front of a mirror and was rubbing her finger across her eyelashes and eyebrows watching each little hair fall to her chubby cheeks. She called for her mom to come and look and she remembers her mom having tears in her eyes, but didn’t understand why.

Over the next couple of days everything was gone. Total hair loss. Still to the little girl it really wasn’t a big deal, because it wasn’t a big deal to her parents or anyone else around her. She would now wear a hat outside to play or when they would go places.

She remembers people staring at her, and adults asking her mom, “So how long has she gone through Chemo?” Her mom would say she doesn’t have Cancer she has Alopecia. Some people would walk away still talking and some people would just stare and say, “Oh what a pretty girl.”

Well school wasn’t really that big of a deal either. She went to a small Christian School and the school principal had a little meeting with all the kids and explained to them what was wrong with the little girl.

She remembers it was time to go wig shopping and what a struggle. She hated them. They didn’t feel good, they looked like old women hair she would tell her mom.

After going many years to the private school she begged her parents to enroll her in High School. So they enrolled her into High School. She had a pretty long curly wig at this time. Her first two years went well. Some kids would make comments, but nothing that couldn’t be overlooked. By this time the little girl’s skin had gotten so thick from the stares and people talking that it really didn’t bother her to much. At least that’s the way she wanted everyone to think.

Her senior year had arrived. She was so excited to graduate. One day walking down the hall she saw a mentor walking a boy with a cap on showing him around and telling him where his classes are. She really didn’t pay any attention but remembers the mentor calling him Josh.

The next day Josh was in one of her classes. She looked over at Josh and could see that under his hat he didn’t have any hair. He didn’t have any eyebrows, and no eyelashes. She thought to herself there is someone like me. She was excited to get to know Josh.

Disaster hit hard at school. Once Josh arrived and she started to talk to him rumors were going wild. So wild she could only take one day at a time. She started hating going to school. People were making fun of Josh and trying to take her wig off of her.

Well this is about the time AIDS had just starting coming out and people didn’t know what AIDS was and how it affected people. The kids at school started to tell other that Josh and the girl had AIDS. The kids went home and told there parents that there were kids in the school with AIDS. The girl couldn’t go to the bathroom without being threatened to be beat up if she didn’t leave.

After all the struggles and tragedies at school the girl dropped out. She only had a few months left of school. She had already had her invitations, pictures everything done. The pain was too awful for her to carry on.

36 years later the little girl is a proud wife of a great husband and a proud mommy to 3. This little girl is me. I wanted to share this story with you all because now there is not just a handful of us with Alopecia. There is now 5 million of us in the United States alone. Thank you for allowing me to share my story, and if you have any type of hair loss please know that you are not alone.

Love,
Sandy