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Teen learns to live with Lupus

Ashley Cuadras, 14, is on medication that works for her. so she
Ashley Cuadras, 14, is on medication that works for her. so she's ready to be responsible for herself in dealing with her Lupus.
— image credit: Steve Powell

MARYSVILLE ­­– When it comes to diseases, Lupus gets no respect. There are walkathons to raise money and awareness to fight many other diseases. But not Lupus.

Marcia Cuadras and her 14-year-old daughter, Ashley, don’t think that’s right. They want to raise awareness of the disease Ashley has.
Why?
“So people will quit feeling sorry for me,” Ashley said.
Because people lack knowledge about the disease, Ashley said people have pitied her much of her life. As she grows up, she has come to realize many of her “friends” liked her because they felt sorry for her. It got to the point she wouldn’t tell friends about the disease for a long time because she didn’t want them to like her out of pity. But she wants people to like her for who she is.
“Because people didn’t know about or understand what I have they would go overboard” to protect her, Ashley said.
Now she is old enough to be responsible in caring for herself.
“I know my limits,” she said. “If I get carried away I breathe heavy. I get tired easily.”
Cuadras said every summer Ashley goes to a camp for children with the disease and brings backs pamphlets. She gives those to her teachers with the hope they will be read to the students so they better understand what Ashley has. But only about one in five teachers follows through.
As a result, Ashley often felt shunned by other students because of their ignorance.
“One kid asked, ‘Can I catch it?’”
No. Dr. Kristen Hayward of Children’s Hospital in Seattle explained that Lupus is a disease of the immune system, where instead of protecting the body from infection it actually attacks tissue and can damage vital organs.
About five million people have Lupus, with minorities and women ages 14-45 more likely to get it. Lupus is genetic but also could be caused by environmental factors. The exact cause is still unknown.
“We don’t understand it entirely,” Hayward said, adding she treats “a good chunk” of  children with the disease.
As to why there is not much awareness about the disease, Hayward said a main reason is because it mainly affects people in a lower socio-economic status. She also thinks it is under-diagnosed because of its trickiness. Many of its symptoms are similar to other diseases.
Ashley, who has been treated by Hayward since 2009, is taking medicines to prevent organ damage. She is told to reduce her stress, have good nutrition, exercise, meditate, and listen to soothing music.  If she doesn’t, she can have achy swollen joints, fever, fatigue, skin rash, chest pain, hair loss and seizures.
For people who get the disease later in life it can be fatal, Hayward said. Treatment for Lupus has improved since the 1950s, adding to the life expectancy. Steroids are used, and medicines have fewer and safer side effects.
“Everyone’s a little different,” Hayward said. “We taylor the drug regiment. Ashley’s had to deal with skin and joint issues, but not major internal organ problems.”
Ashley has to be especially cautious in the summer. The sun can trigger the disease and stimulate a flare up, the doctor said. So, she wears hats and lots of sunscreen.
Ashley is active. She loves to play basketball and ride her skateboard. She loves to play hard, but now “she knows her limits,” her mom said.
“She used to overdo it in PE and then not be able to walk,” Cuadras said. “When she was a child she didn’t know how to monitor it. But she knows now how to taper back.”
Ashley was diagnosed with Lupus when she was 6. She started having problems at 3 1/2, but doctors couldn't figure out what it was. Most of her problems have been with arthritis in her joints, mild memory loss issues and cataracts in both eyes.
“For a long time they couldn’t figure out what was wrong,” Cuadras said. “We had a hard time figuring out what to do with her” because of a lack of information.
Ashley started taking a new drug that’s not usually for Lupus patients. “But it works so that’s what we’re going to stick with,” Cuadras said.
Her mom said the disease has hurt her emotionally because she’s been in pain most of her life.
“But she’s pretty tolerant,” Cuadras said. “Looking at her you wouldn’t think anything was wrong.”
Cuadras admits she’s been overprotective in the past, but now she’s teaching her daughter how to order her own medications to help her gain her independence.
“I want to give her the tools then back away,” Cuadras said. “This isn’t going to hold her back.”
Cuadras said children are more accepting of the disease than adults, especially teachers.
“I don’t want them to feel sorry for her, just aware,” Cuadras said. “I don’t need you to give her a hug — just be understanding when she’s in pain.”

 

 

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