Jul. 18, 2017

Pacific Northwest Family Copes with Lupus Together

Researchers don’t yet fully understand the causes of the autoimmune disease lupus. However, they do know that it tends to run in families. About one in five people with lupus have a parent or sibling also affected by this disease. No family understands this statistic more personally than Oregon and Washington sisters Kimberly Moore and Jennifer Yates.

Kimberly started experiencing strange symptoms when she was a teenager—unexplained skin rashes, extreme fatigue, and frequent aches and pains. However, after many doctor visits and lab tests, they were no closer to an answer.

“I was eventually referred to a psychiatrist,” Kimberly said. “Everyone seemed to think it was all in my head.”

Unfortunately, Kimberly’s symptoms persisted for more than 20 years. She eventually found a local dermatologist in the Eugene-area who took her symptoms seriously. Her dermatologist worked to connect her with a rheumatologist, and together were able to reach a definitive diagnosis in 2007—lupus.

“Initially, I was kind of excited just to know what was going on.” Kimberly said. “The only time I’d heard of lupus before was in a ‘90s soap opera, where one of the characters had it.”

Kimberly’s mom, Donna Laue, and sister, Jennifer, were just as baffled by the diagnosis. No one else in the family had been diagnosed at this point, so neither of them knew much about the disease. Jennifer was in a pre-medical program at the time, and started researching the disease more.

“The information I found was in diagnostic manuals and textbooks,” Jennifer said. “ It wasn’t much… I even went to a few professors and they couldn’t really help either. They all said that autoimmune diseases are really a mystery and most of the diagnoses come out of ‘ruling everything else out’ mind sets.”

Jennifer could not have guessed that this research would be helpful again just five years later.  Jennifer started experiencing unusual symptoms—hair loss, kidney problems, and an underactive thyroid. She was seeing a family practitioner who referred her to an endocrinologist. The new specialist reviewed Jennifer’s medical history. When she saw that Jennifer’s sister had lupus, she immediately referred her to a rheumatologist.

“I don’t think anyone would have considered lupus if it wasn’t already in the family,” Jennifer said. “Kim’s diagnosis sped up mine tremendously.”

While the causes of lupus aren’t fully understood, Donna couldn’t help being worried that both her daughters had been diagnosed.

“I was thinking things like, ‘Oh my gosh. What did I do wrong? Was it something I ate when I was pregnant or something?’” Donna said.

After the initial shock of the diagnoses, the family was determined to fight back and support each other. Jennifer and Kimberly frequently text and call each other about new symptoms and share ways of coping with the challenges lupus presents.

They related a story of a family trip to San Diego. Jennifer was recently diagnosed at the time and wanted to spend a lot of time at the beach. Lupus can cause photosensitivity, which means that sun exposure can trigger more severe symptoms.

“I was still in denial at the time,” Jennifer said. “Kim told me that lupus and the sun wasn’t something I could play around with…”

“We went on a pirate ship cruise and I spent most of the time below deck,” Kimberly added. “I came up for just a quick picture and got severely burnt…Our family is the type that loves a reunion in the park in August. They don’t always understand that it’s not something we can really do.”

“Now we at least have each other to stand under trees with,” Jennifer added with a laugh.

They decided to take their support one step further in 2016. Kimberly and Donna, who live near Eugene, knew there was a Walk to End Lupus Now event in Portland each fall. However, Portland is a few hours from Eugene, and they couldn’t make the drive. When Jennifer moved to Seattle in early 2016, Portland then seemed like the perfect meeting place.

They registered for the walk, and started fundraising through social media and letters to friends and family.

“I felt like I was bombarding my Facebook friends,” said Kimberly jokingly.

Their efforts paid off, and their walk team raised more than $2,000 in just over a month. The trio is now working on the Portland Walk to End Lupus Now planning committee to make an even bigger impact.

“I can feel helpless when it comes to this disease,” Donna said. “Getting money for research is the only way I feel I can help my kids.”