MENOMONIE — Multiple sclerosis is something that Menomonie resident Emily Blosberg was all too familiar with before she received her own diagnosis.
“My dad was diagnosed with MS when I was 2 years old,” she said. “And so, I grew up in the MS community and I knew what MS looked like because of my dad. But then, my symptoms all started when I was 14 years old. I was in and out of the hospital, trying to figure out what was going on.”
Blosberg recalled that time having taken many tests to diagnose a full year of unexplained tingling, vision issues and fatigue. “Kids do not get MS” is the narrative Blosberg said she has heard too many times.
Like fewer than 5,000 adolescents and teens in the U.S. today, according to the National Multiple Sclerosis Society, Blosberg was diagnosed with pediatric-onset MS.
For those who are unfamiliar, MS is often not easily recognizable and requires educating others in part because of the “invisibility” with its symptoms. It is a chronic autoimmune disease affecting the central nervous system, including the brain, spinal cord and optic nerves.
It is also unpredictable, and someone with the disease can be affected throughout different areas of the body as their brain mistakenly attacks vital nerve insulation.
“I felt so guilty, because at 14 years old, when you’re in and out of the hospital, you get a lot of attention. You get a lot of cards in the mail. You get a lot of visitors,” Blosberg said.
“So I did blame myself for a long time, even though I knew that was silly. My dad blamed himself because we’ve been involved in the MS community since 1998, and through tears he said, ‘I just didn’t do enough because you got it anyway.’”
But even with an early diagnosis, having faced feelings of isolation and missed nearly half of her high school classes, Blosberg continues to live her best life. She has been married for four years, and her family welcomed their second child at the hospital less than two weeks ago.
“We have two kids: almost three years old and ten days old, and I’m feeling really good. And medically I’m feeling really good as well,” she said. “I visit my neurologist twice a year, and every time he says, ‘You’re looking great.’”
Over the years, Blosberg has also used her life experience as a means to continue connecting with the MS community.
Currently in River Falls, teens with MS from around the world are wrapping up their week at Oscar’s Teen MS Camp. Blosberg said it has been an annual camp hosted in Wisconsin since 2019, as teens are able to build a community and learn how to advocate for themselves.
It also was an effort born out of Blosberg’s Mr. Oscar Monkey nonprofit, where she started making MRI-friendly sock monkeys based on one she sewed herself and named “Oscar.”
“I started a social media page for him, just trying to share awareness about Pediatric MS and the things that I could do even though I have MS, And Oscar was doing things as well,” she said.
“People started asking if they could have Oscar, and I was like, ‘Oh sorry, he’s mine.’ So I made smaller versions of Oscar called ‘Oscars buddies,’ and whenever I found a child or a teenager or a child at heart that was living with MS, I would send him one of Oscar’s buddies.
“People would post their pictures on our social media, and it was a way of being able to visually see that there were others out there living with MS. But then they wanted to meet each other, and so that’s when I started our camp programs.”
Blosberg said when she was diagnosed at 15, she went to everywhere she could think of to find somebody else diagnosed with MS her age.
“It took about a year and a half to find someone who lived in South Dakota,” she said. “That’s still not very close. We connected online, and the instant understanding was incredible. She and I were able to understand each other so much more than any of my friends at school and the loneliness that I had felt at school because my peers couldn’t get it.
“My dad and I actually drove out to South Dakota and met her, and on our way home, I looked at my dad and I said, ‘There are other teenagers out there.’
“I know there are others out there and I know that they’re feeling the same loneliness that I have felt, and I don’t want that for them.”
In addition to building community, MS Teen Camp acts as a way for teens to learn how to advocate for themselves. Many conversations about topics like medication come organically, as Blosberg said a recently FDA approved treatment called Ocrevus is a hot topic this year.
Treatment for MS has evolved over the years to help address many of the symptoms that people may experience. When her father was diagnosed in 1988, there were roughly three medications available. There were 13 options when she was diagnosed, and more options are available today.
Blosberg said for her, Ocrevus was an option that allowed her to treat her MS symptoms and have an outlook on the future while talking about family planning with her husband.
“There are still very, very few, but with every advance and research, the options that are available are just greater and greater and truly life-changing,” she said.
As Oscar’s Teen MS Camp wraps up on Saturday, Blosberg said there are students who are fighting all of these challenges every day. While MS can be a lonely disease and an invisible one, being able to come together gives those teenagers a place where they belong.
Speaking from her own experience, Blosberg said to get the help that you need and do not worry about trying to hide it.
“Find the community and support, because it really makes a difference,” she said. “It can be life changing to have people around you who fully understand. And you’re not alone, there is a community out there that is supporting you.