'Heart breaking' discovery

Rare autoimmune condition gives teen a new outlook on life

At 17, life can seem infinite. But for Charity Lynn Anderson, that feeling changed last May.

 

Anderson didn’t know she was ill at first. It started with little red dots, known as petechiae, all over her legs. She passed it off as razor burn, but then more signs followed. It wasn’t until she saw the countless bruises on her legs that she decided to go to the hospital.

The doctors diagnosed Anderson with Idiopathic Thrombocytopenic Purpura in May 2014, and prescribed her with a steroid called Prednisolone. She took five pills in the morning, and five at night.

ITP is an autoimmune disease affecting a person’s platelets. Platelets are what helps blood to clot when a person injures themself. ITP patients run the risk of having internal bleeding that can be fatal.

“They first said it might be leukemia, I was terrified,” Anderson said. “After I responded to the treatment I calmed down. It’s still scary, like anything, a car crash, I could of bled to death.”

Doctors told Anderson they couldn’t count her platelets. At a low count of 4,000 platelets, she could have had internal bleeding at any moment without realizing she was in mortal danger. A simple fall could have been fatal.

One of her biggest challenges was the day she had to step away from the Juneau-Douglas High School varsity cheerleading team. Her platelet count was not stable, forcing her to leave the sport she’d been dedicated to since seventh grade.

“That was like my thing to do,” Anderson said. “That was one of the hardest parts, it was heart breaking.”

With the loss of a sport she had spent years dedicated to, it made her more negative and less determined toward life.

A team that she had been a part of was ripped away instantly, and there was nothing she could do. The steroids that helped her platelets stay at a high count were becoming a love-hate relationship. She needed them to survive, but living on them came at a cost.

“I didn’t know about all the side affects,” she said. “That I would gain so much weight, mood swings, depression, and being tired all the time, migraines, no energy to do anything.”

Some students didn’t understand what was happening in Anderson’s life. They started asking her friends what was happening. She also had to deal with the negative remarks she got from peers

“Most of it was because of the weight gain. I gained 30 pounds within just a few months. I definitely felt like there was talking wherever I went. Looks. That was another difficult thing I had to deal with. Stretch marks everywhere. Nobody really warned me.”

The steroids didn’t help with her academic career either. Anderson ended up missing a lot of school because of migraines so severe they caused vomiting. She would have to sit in a dark room until her migraine passed.

During school, she started to have headaches so severe she’d cry. Sometimes she was too dizzy to walk. For ITP patients, migraines can be a sign of bleeding in the brain. Once Anderson got her CAT Scan results back, it was determined she had a bad sinus infection.

Anderson and her family have to take every headache serious because one missed symptom could be fatal.

The JDHS faculty were understanding and supportive of Anderson’s condition. They helped her worry less about not being able to graduate.

“The school works with me, they aren’t going to let me fail,” she said. “It’s stressful to get caught up, but I had a lot of help.”

The school didn’t just help with her grades but with her overall outlook on ITP. During the beginning of the school year when students are trying to find a place to sit and whom to sit with, Anderson and a friend took the opportunity to sit with students with disabilities. This prompted her to start peer tutoring them.

“It makes my day seeing them,” Anderson said. “That was a big thing for me. Being able to help them. It makes me feel a lot better, knowing that I can give even though I need stuff. It’s really rewarding.”

While interviewing Anderson at the peer tutoring room, one of the students told Anderson he loved her, and that he likes it when she helps him read. It was clear that she had a big impact on his life, and vice-versa.

Anderson doesn’t need the peer tutoring credits to graduate; she does it because it’s what helps her get up in the morning. Every day she looks forward to seeing the students and helping them. Some days she stays after school to socialize.

To Anderson these peers aren’t just random students with disabilities — they’re her friends.

Anderson’s journey influenced her to have a new perspective on life and how to have a more positive approach.

“I look at things a lot differently,” Anderson said. “If someone is different and I can tell something is wrong, I don’t judge them right away. Because you don’t know what’s up with them. That’s what was frustrating for me. People would talk without even knowing what was happening. I am open more with what people are going through. I just want to help people now.”

She is now planning on taking a Certified Nursing Assistant course at the University of Alaska Southeast in the fall and to continue helping students with disabilities by working at REACH. It’s a plan she had never thought of before she was diagnosed with ITP.

Not all of her peers were negative. She has a good group of friends who are concerned and supportive. When she started feeling depressed and wanting to sleep most of the time, her friends encouraged her to get out and do something. Anderson’s friends are even planning a party for the day she’s off steroids. Tears started falling down her face as she recalled their support.

“My friends are great. They’re so excited for me,” she said. “They’re already planning stuff out. And always asking how I am and checking on me.”

Once, when Anderson’s friends found out she passed out at dinner, four of them rushed to the hospital to be at her side.

These days she doesn’t see herself as a girl with ITP. She has a more positive outlook on life.

“I’m not happy that I got it, but it taught me a lot about myself, what I can deal with and what I can’t deal with.”

Anderson is not only anticipating the day she graduates from high school, but the day she can close the chapter on ITP. She’s looking forward to the moment when doctors say she’s in remission.

“I can get off the steroids hopefully before graduation,” she said. “Then I won’t have to worry about anything, and just be free for a little bit.”

• Contact Donna Cashen at donna.cashen@juneauempire.com or at (907) 523-2243.

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