'A really lonely disease': the incredible story of one 15-year-old's rare diagnosis and how she is helping others

Rachel Grumman Bender
·7 min read

Multiple sclerosis has been a part of Emily Blosberg’s life for as far back as she can remember.

When she was 2 years old, Blosberg’s dad was diagnosed with multiple sclerosis — an autoimmune disease that disrupts the central nervous system. “At that point, my parents had absolutely no idea what MS was,” Blosberg tells Yahoo Life. So when the doctor said, “You have MS,” Blosberg says her parents’ first question was, “‘What does that mean? We have young kids at home and how is that going to affect our lives?’” But rather than feeling defeated by the diagnosis, Blosberg says that’s when her dad and mom decided that they weren’t going to let MS stop them from living their lives and experiencing things as a family. “We just learned to do it with MS,” she says.

Emily Blosberg and her father while she's in the hospital. (Photo: Emily Blosberg)
Emily Blosberg and her father while she's in the hospital. (Photo: Emily Blosberg)

But 13 years later, the disease would become even more personal. When Blosberg was in the eight grade, she noticed that her hand felt “a little strange,” she recalls, like it had a glove on top of it. “So I told my mom about it, and she said, ‘Let's keep an eye on it and see what the doctor says,’” says Blosberg.

However, the sensation she was experiencing in her hand eventually spread first to her entire arm and then to her whole body. A couple of weeks later, her eyes started moving around rapidly and uncontrollably — a condition called vertical nystagmus — and her skin became extremely sensitive.

Blosberg says the symptoms she was experiencing felt “familiar” because they “really looked a lot like things that my dad was experiencing,” adding: “We knew what the MS symptoms were.”

A rare diagnosis

Dr. Jeffrey Dunn, an MS specialist at Stanford Health Care, tells Yahoo Life that MS affects the central nervous system, impacting the brain, spinal cord, and optic nerves. “But because the central nervous system controls our awareness of everything, MS can really cause any symptoms that a human body can feel, from the top down,” says Dr. Dunn, including fatigue, double vision, tingling, dizziness and weakness. Although these symptoms can be caused by several different health conditions, Dunn explains that “one of the most helpful clues” with MS is that the disease “tends to start slowly,” build up, and then linger for “several weeks before getting better.”

Emily Blosberg with her family, including her father, who she calls her role model. (Photo: Emily Blosberg)
Emily Blosberg with her family, including her father, who she calls her role model. (Photo: Emily Blosberg)

Although the symptoms were familiar to Blosberg, it was hard for her to believe that she might have MS. “The chance of a child of a parent with MS getting MS… is about 3 percent higher than the general population,” says Blosberg. “So although it was a possibility, it was never really a big, big thing in our minds until my symptoms started to show. And then we kind of just realized that maybe this is what we're dealing with.”

Dr. Dunn explains that there are both genetic and environmental factors that can increase the risk of MS, which is why it “makes this so difficult” to parse out the cause in Blosberg’s case. Dr, Dunn says it’s possible that Blosberg developed MS because of a genetic predisposition. But it’s also possible that she and her father shared similar environmental exposures, such as a lack of sunlight exposure and vitamin D, which are MS risk factors.

'A really lonely disease'

After 14 months of “countless” MRIs and other tests to get to the bottom of her symptoms, Blosberg was officially diagnosed with MS in 2011. At first, she says she blamed herself for the diagnosis. “I was appreciating the attention that I was getting,” she admits. “I was getting letters in the mail. I was getting visitors. I pretty much had my mom's undivided attention for a year, as they were trying to figure out my diagnosis. And so when I finally did get the diagnosis, I blamed myself because I [had] wanted that attention back…. I felt like it was my fault….[but] I knew that logically it's not.”

She adds that the diagnosis was also frightening. “It was scary — knowing that I had seen my dad giving himself injections for 13 years at that point and the struggles that he faced, knowing that that was in my future.”

MS symptoms are also often “invisible,” which is why Blosberg calls MS “a really lonely disease.” She says, “People can't tell when you have MS. And so my relationship with my school friends was hard because they didn't understand that I was very fatigued.” It’s that loneliness that Blosberg says only adds to the “burden of an MS diagnosis.”

Finding her tribe of teens with MS

She realized she needed to connect with other teenagers who had MS and truly understood what she was going through. So Blosberg reached out to the National Multiple Sclerosis Society — where her father had volunteered for years — but at the time, Blosberg says they didn’t know of any teens with MS.

‘If you find anyone else young, let me know. ‘I want to talk to them. I want them to know that they're not alone.Emily Blosberg, diagnoses with MS at age 15

Despite the setback, Blosberg didn’t give up. “I knew there had to be other kids out there, and I wanted to connect with them,” she says. A little over a year after she was first diagnosed, Blosberg finally found a 16-year-old in Sioux Falls, South Dakota with MS. That teen knew of others in her area who also had MS, and the group decided to get together, with Blosberg’s dad driving her the four hours to Sioux Falls so she could meet them all.

Blosberg then decided to create a Facebook page for young people with MS and continued searching for others and enlisted the help of the National MS Society. “‘If you find anyone else young, let me know,’” Blosberg recalls saying to the organization. “‘I want to talk to them. I want them to know that they're not alone.’”

MS is often considered “an adult disease,” explains Blosberg. But, she emphasizes, “It’s not just adults. Kids get MS, too.” While the age of onset for MS is typically between 20 and 40 years old, Dunn says, “It can definitely affect kids and teens.”

Oscar the monkey

Blosberg’s Facebook page was her way of bringing young people with MS together. But she decided to take things one step further by founding Oscar, the MS Monkey — a nonprofit that supports children and teenagers who have been diagnosed with the disease.

Blosberg with
Blosberg with "Oscar the Monkey." (Photo: Emily Blosberg)

It all started with a hobby: Blosberg had always loved knitting, but that became too painful after she developed MS. So after a friend taught her how to make sock monkeys, she decided to make one for herself, using an orange sock — the hue that represents MS — and naming it Oscar. Blosberg eventually started making sock monkeys for other kids and teens with MS so they would feel less alone.

The organization grew from there. The nonprofit has sent nearly 500 care packages to young people around the world, each containing one of Oscar's handmade “buddies” — a smaller version of the original Oscar — along with hosting camps for families and teens with MS pre-COVID. “No one has to fight alone,” she says.

Blosberg has sent over 500 care packages with
Blosberg has sent over 500 care packages with "Oscar the Monkey" to other teens with MS. (Photo: Emily Blosberg)

Through it all, Blosberg says her entire family has been proud of her — especially her father. “He knows what it's like to live with MS,” she shares. “He's my role model, though. I grew up watching him live with MS and not letting MS get in the way. He's shown me how to do that. And I hope that I'm doing him proud.”

Video produced by Jacquie Cosgrove

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