Rural isolation, youth complicate Wagner teen's MS diagnosis
WAGNER -- It can be hard for a teenager to admit when she's sick.
That's why, for a while, Alyssia Thompson tried to pretend she hadn't been diagnosed with multiple sclerosis.
"I guess I just kind of chose to not think I had it," she said.
The 16-year-old Wagner High School student was diagnosed with the disease on April 26 after six years of dealing with a variety of symptoms, fatigue chief among them.
"We didn't know what we were dealing with," said Kimberlee Selwyn, Thompson's mom.
After such a long time of dealing with the unknown, Thompson and Selwyn, enrolled members of the Yankton Sioux Tribe, said it was a relief to have an answer -- but it still wasn't the answer they'd hoped for.
"My mom was crying," Thompson said of the day they got the news.
Multiple sclerosis is an autoimmune disease that affects the brain and spinal cord; it impairs things like balance, motor skills, vision and memory.
"It basically just kind of cuts the connection between your brain and your body," Thompson said.
For Thompson, that means she gets tired a lot, is shaky, and sometimes suffers from blurry vision. But she relates those things matter-of-factly, even with a touch of humor.
"I drop things a lot," she said with a smile.
Her disease also makes her susceptible to temperature, heat in particular. Heat can accelerate and exacerbate her symptoms, she said, which is why she can no longer play sports, like golf.
"It's just too much being in the sun, it gets me tired too fast," she said. "If I feel myself getting overheated, I have to stop."
She likes basketball and volleyball but has had to give them up, too.
"They're all high-energy activities," Selwyn said.
Thompson still stays active, though, with involvement in cheerleading, band, yearbook, FFA and several vocal groups. And, her mom proudly notes, just last month Thompson was crowned queen of the military ball -- the most important extracurricular in Selwyn's mind.
"I had forgotten about that," Thompson said with a smile.
While her day-to-day routine hasn't changed all that much yet, one of Thompson's least-favorite parts of her disease is her daily injection of Copaxone which she administers to herself.
"It doesn't stop the symptoms of MS. It just kind of slows them down so I can live a normal life," she said.
The soft-spoken teenager still grows wide-eyed recounting the moment when nurses told her she would have to inject herself. Even having a nurse show her how to do it didn't provide much comfort at first.
"It took me like 10 minutes to get myself in position and ready," Thompson said. "I absolutely hate needles."
'I didn't know what to look for'
According to the MS Foundation, more than 400,000 people in the United States have MS; about 2.5 million people worldwide are estimated to have the disease.
And still, it's been hard for Thompson and her family to find information. The typical diagnosis age range of 20-40 makes Thompson a minority.
"We looked around the community and found maybe one person who has it, and they're like 80," Selwyn said. "This disease is something hardly anyone knows around here."
Sioux Falls, about a two-hour drive from Wagner, is the closest place that offers any resources, Selwyn said; the closest pocket of major MS support group resources is Minneapolis, about six hours away.
"There's nothing out here for support or resources to help," Selwyn said.
The National MS Society, which provides advocacy and funds research among other endeavors, reports its Upper Midwest Chapter is based in Minneapolis.
For Selwyn, a single mother of six, those aren't viable options. It's the same reason she didn't go to the Mayo Clinic when first seeking a diagnosis for her daughter's disease.
"There's no possible way I could financially afford that," she said.
Her lack of awareness, Selwyn said, probably contributed to the delayed diagnosis of her daughter's disease.
"I didn't know the signs, I didn't know what to look for," she said.
When she would get sick, Thompson said, she wouldn't get one or two warning symptoms, like a runny nose, followed by a cold.
"It's like it would all hit at once," she said.
Then she would be sick for a week, or several, or even a month. Then, she'd be fine.
"I'd be better for almost a year," Alyssia said.
Each time, she and her mother thought she was back to full health -- until she would get hit again. That happened four times before they made the trek to Sanford Children's Hospital in Sioux Falls, where she was diagnosed.
It's starting to get easier, but Thompson said she still has a hard time talking about it to her friends.
"They want to be supportive," she said. "Every time they want to talk about it, I'm like 'OK, let's talk about something else.' "
What has made it easier, she said, is meeting others have have her disease, like a 19-year-old from Sioux Falls, or another 16-year-old from Minneapolis, who she befriended through the National MS Society.
"They've been helping me cope with it," she said.
She's trying to get back into the habit of taking her Copaxone treatments, she said, and has even embraced the fact that this week was National MS Awareness Week. Thompson said there was MS trivia all week at Wagner High School, and students from two area schools, Wagner and Lake Andes, opted to wear orange on Wednesday in her honor.
Her boyfriend, Brett Blume, even organized a flag football team fundraiser today in Armour, with the proceeds going to support MS research.
"I'm getting a lot of help," Thompson said. "And spreading awareness helps."
Selwyn said she's gearing up to start her own fundraising, to help defray some of her daughter's long-term medical costs.
"Medicaid only pays for so much, then we have a co-pay," she said.
In the meantime, Thompson said she's hopeful that she'll soon be able to trade out her daily shots for a pill, and is slightly sad to see the snow melt as the mercury rises.
"I've been enjoying winter," she said, noting that the cool temperatures help contain her symptoms. "I'm not looking forward to summer."
No matter the weather, Thompson maintains a quiet optimism, as she continues "just trying to be a normal teenager like everyone else."
One of the bright spots in Thompson's ongoing battle was her recent shopping trip to Sioux Falls -- literally a wish come true.
At first thinking the Make-A-Wish program was "for kids," Thompson later applied to the program through Sanford. Much to her surprise, her wish was granted.
"I always saw it on TV, and I never would have thought I'd get a wish," she said.
While many kids gravitate toward the magic of Walt Disney World, Thompson's wish was for a shopping trip, which she and her family made to Sioux Falls in December.
"Growing up, we didn't have a lot," Thompson said. "Once we started getting on track, we had a house fire."
That was in December 2010.
"We lost everything," she said. "I saw this as an opportunity to get back what I lost."
Why not Mall of America, or some other major metropolitan area?
"She just said, 'I'd rather stay local and keep it simple,' " Selwyn said of her daughter.
The day consisted of four stops: Best Buy, the Sioux Empire Mall, lunch at Red Lobster, and Toys 'R Us, "for the kids," Thompson said.
Not only did Make-A-Wish treat Thompson, but Selwyn said the organization provided a gift card for her younger siblings, "so they wouldn't feel left out."
"Not having to worry about watching my little sister who likes to follow me around, not having to worry about budgeting, they just kind of let me have whatever I wanted, which was really weird," Thompson said, smiling.
They took the trip on Dec. 14 -- the perfect lead-in to Christmas.
"It was probably one of the best Christmas presents," Thompson said.