Living with Lupus

At age 13, Gabby Castillo sits down once a month with people double, triple her age that are going through what she is going through. She drives with her mother one Saturday of the month from her hometown in Lockhart, Texas to San Antonio to discuss her struggle with Lupus with other members of the Lupus Foundation of America.

Anyone can be diagnosed with Lupus, but 90 percent of the people diagnosed are women, according to the foundation. Gabby is the youngest member of the support group, but she doesn’t let the stories of others discourage her.

Gabby goes to middle school, has crushes on boys, plays sports, and dreams of becoming a doctor or dentist. She makes A’s and B’s in honor classes at Lockhart Junior High School despite the time she must devote to doctor visits, medical exams and surgeries. At the age of 13, she was in the hospital for a week due to surgery on her kidney. She was determined to catch up, so she went to tutoring every day.
She is currently playing volleyball — her favorite sport. She smiles before going on the court and then puts her game face on when the ball is in the air. She is always in the perfect passing position, her eyes are locked on the ball as she anxiously waits to make a pass. Almost every one of her passes goes perfectly to the setter.
“I wanna play volleyball for UT or Texas State,” Gabby said.

She was diagnosed with Lupus last year and battles the symptoms that come with it. Lupus is a chronic auto-immune disease that attacks healthy organs. Unlike other common diseases that weaken immune systems, Lupus makes the immune system strong, so strong it doesn’t know when to stop attacking or what to attack.

“It kinda scared me cause I didn’t know exactly what it was. So for a while I thought I was gonna die. But my mom was like, ‘You’re not gonna die! It’s just a condition you’re gonna have to live with for the rest of your life.’” Gabby said.

She experienced hair loss along her forehead, but Gabby said her confidence wasn’t affected. She simply got bangs to cover her hair loss. If one side of her hair lost more than the other, she’d angle her bangs to cover it.

“Someone who’s young and has a real optimistic outlook on life, it’s not a big of a deal to them. I think it doesn’t hinder them as much,” Evelina Solis, a member of the support group, said.

At the support group meetings, Gabby listens to adults share their stories about Lupus affecting their lives. She wishes there were more kids around her age, but having her best friend there helps her feel comfortable.

“Most of them don’t want to scare Gabby, but I tell them to just get it out. It’s better to know what to expect,” Melanie Castillo, Gabby’s mother, said.
Gabby said the meetings are a little scary, but she’s glad to know she’s not alone.

“Some people have crutches and they have to walk with those now cause their legs or their bones are all messed up. But they told me that was a reaction to the medicine they used,”

This scares Gabby since she loves to play volleyball year-round. She was moved up in her club volleyball team to play with 15-years old girls. She’s 4 feet 11.5 inches- she emphasized the half inch- and plays in the back row as a defensive player, a passer.

After her volleyball games, which end around 7 p.m., she’s energetic, smiling and ready to eat. As Gabby sits in the family car to go home, the Lupus puts a toll on her body.

“I get sore in the car when sitting down and I’m just like, ‘Ugh I’m so sore.’ But my doctor told me that after games I should stretch after every game… It helps a little bit,” Gabby said.
Lupus hasn’t stopped her from succeeding in volleyball but it did stop her from running track. People with Lupus cannot be in the sun for a long time. When she was in the seventh grade, she tried out for track. On the third day of tryouts, she had to go to the hospital. She spent a week there because she had a kidney failure caused by Lupus. Gabby doesn’t believe running caused her kidney failure her mother did, and wouldn’t let her run.

“My mom, since I went to the hospital on the third day, was like, ‘I don’t want you to do track but you can be a manager,” Gabby said.

Gabby seized chance to remain a part of the track program. She has to wear a cap and a lot of sunscreen when outside to avoid getting a rash.

“We’ll [friends] be outside and I’ll get really red. And they’ll be like, ‘Gabby why are you so red?’ And I’m like, ‘Oh I’m flaring.’ I’ll sit down [inside] for about five minutes until I turn pink and then I’ll go back outside,” Gabby said.

The most common side effect of Lupus is fatigue and Gabby feels it every now and then. She takes Vitamin D to help with exhaustion and soreness after every game and practice, and to avoid being lethargic the next day. She said she goes straight to bed after volleyball games so the following day could be better, but some days are still tough for her.

Friday afternoon, the day after her volleyball game, she didn’t have lunch with her friends because she was too tired. She considers these her bad days.

“On my bad days, I don’t want to talk to anyone. I go to the nurse’s office and sleep,” Gabby said.

Gabby continues to dream high when thinking about her future. She wants to go to the University of Texas at Austin or Texas State University. Lupus doesn’t affect her positive mindset and she’s come to accept it and deal with it.

“After a while I got kinda used it. So now, I don’t even know it’s there,” Gabby said.

December 2010

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