What is Lupus Disease? Knowing the Signs of Lupus in Children and More

Though it’s estimated by the Lupus Foundation of America that 1.5 million Americans have lupus, symptoms of this autoimmune disease manifest in a number of ways. Bridget Leonard of Farmington Hills, who has lupus, can attest to people not knowing much about the disease – and she thinks that’s a big part of it.

“No two people have the same symptoms,” explains Leonard, who was diagnosed about 10 years ago. Her daughter, ChyAnn, 14, was diagnosed, too. Both she and her daughter have had different symptoms, pains and complications. “It affects everyone in different ways.”

What is lupus disease? Since May is Lupus Awareness Month, Children’s Hospital of Michigan joined with Metro Parent in May 2015 to inform readers on the disease, as well as the signs of lupus in children. You can read about this in the digital edition of the magazine.

Living with lupus

Once you’ve learned all about signs of lupus in children, and who tends to get lupus (hint: women and parents of teens will want to read more!), you might be wondering what is lupus disease like when you live with it.

For Leonard, she experiences a lot of pain, fatigue and aching joints (she also happens to have rheumatoid arthritis). Lupus affects her skin, too. It took about five years for her to get a lupus diagnosis.

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“I had a lot of skin issues, where I had a lot of rashes and things, and then I was really weak and in a lot of pain. So I went to several doctors,” she says. Yet, for years, “no one could diagnose me.”

Eventually, it was discovered she had lupus, so when daughter ChyAnn woke up one morning swollen in the face and lips, she mentioned to ChyAnn’s pediatrician that she herself had lupus. The doctor ran tests and found ChyAnn needed to see a specialist for lupus. In ChyAnn’s case, her lupus impacts her kidneys. She sees doctors at Children’s Hospital of Michigan.

Even though there is a bathroom right off of Leonard’s bedroom, she says sometimes, it’s a struggle to think about moving that far. She says, “Oh my goodness. Do I really have to fight to get there?” is one of the thoughts she has.

“There are so many times that I go to work and I put this happy face on,” she says – despite the pain she feels. “I know that life continues on.”

ChyAnn is entering high school next year, and while she’s excited for this transition, and she was accepted to an International Baccalaureate program, mom says ChyAnn is worried about missing days due to her lupus.

The toughest part of the day? “Maybe that first hour of the day, taking the time to get out of the bed and get going,” Leonard says. “There are times when we have to cheerlead each other.

“I don’t want her to just give up.”

Advice for parents and kids

Not sure if you should take your teen to the doctor to be tested for lupus? First, read up on the signs of lupus in children. Leonard suggests parents look for those “marker symptoms,” such as butterfly rash on the face, pain and aching joints and others.

Her advice? Push to get tested for lupus if you think you or your child might have it. Parents should know there are specialists in the area that can help teens and young adults diagnosed with lupus. In the digital edition of Metro Parent for May 2015, learn how Children’s Hospital of Michigan has the specialized clinicians and departments to treat lupus in teens.

ChyAnn continues to see specialists at Children’s Hospital of Michigan. She’s looking forward to starting high school, and she’s even been recognized with an award for her various volunteer efforts.

“I was just so proud of her,” mom says. “There’s not that many kids these days who like to spend their Saturday handing out food and helping other people.”

Despite the daily pain and struggles both Leonard and her daughter face due to lupus, they continue to push forward together.

“We have this saying,” says Leonard of she and ChyAnn. “We have lupus; Lupus doesn’t have us.”

Photo courtesy Bridget Leonard.

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