MS Can Be a Kids’ Disease, Too

Ed Tobias avatar

by Ed Tobias |

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kids, Oscar the MS Monkey

(Courtesy of Emily Blosberg/Oscar the MS Monkey)

The age at which a person is diagnosed with MS is usually between 20 and 50, according to the National Multiple Sclerosis Society. But it can be diagnosed in people much younger. In fact, of the estimated 400,000 people with MS in the United States, 8,000-10,000 are under 18 years old.

We older folks have some pretty good support systems to which we can turn to learn about our disease and help us through rough spots. No so much for MS kids. But that’s where Emily Blosberg and her MS monkeys have stepped in. Emily was a 15-year-old ninth grader when her MS symptoms first appeared. She was diagnosed with MS a little over a year later. It didn’t take Emily very long to realize that entering the MS world when you’re a teenager can be a lonely place. So, she tried to do something about that.

Emily started by trying to connect on Facebook with people who were under 18 and living with MS. She then connected with the National MS Society to create a Facebook group for MS youngsters. A few kids joined and young MS patients continue to find their way, periodically.

Emily travels to MS events to connect with young MS patients and to help them connect with each other. She created a stuffed monkey named Oscar to travel with her to represent all young people with MS. She then created an Oscar the MS Monkey Facebook page.

After that, Oscar became so popular that Emily had to make more, each of them by hand. She distributes them worldwide to kids with MS.

This has all now expanded into an MS “Buddy Bash.” Three families, each with a child with pediatric MS, recently traveled from New York, Louisiana, and Iowa to a camp in Wisconsin. There they shared experiences, heard from a neurologist who may have offered them a new perspective on their disease, and listened to a special education teacher explain about accommodations in schools. They also had a lot of fun, as you can see in the video below.

More help for kids with MS

Emily and Oscar aren’t the only ones concerned with pediatric multiple sclerosis. The Pediatric MS Alliance (PMSA) has a membership of over 500, made up primarily of the parents and caretakers of young MS patients. The PMSA has a closed Facebook group and a website.
Some camps also are available for kids with MS. Two that I’m aware of are Champ Camp in Texas and Teen Adventure Camp in Rhode Island.
The National MS Society has created a network of pediatric MS centers. They offer evaluation, diagnosis, treatment, and support to families with a child displaying symptoms suggestive of any central nervous system demyelinating disorder. A child does not need to have a definite diagnosis of MS in order to be evaluated. Late last year, the NMSS published the first issue of an annual newsletter devoted to pediatric MS.
MS is a tough enough disease for an adult to handle. So, hats off to people like Emily and organizations like the PMSA and NMSS that are trying to make it easier for the youngsters who have joined our MS “club.”
You’re invited to follow my personal blog at www.themswire.com.

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

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About the Author

Ed Tobias avatar
Ed Tobias People say to write what you know and Ed Tobias knows about MS. He's lived with the illness since 1980, when he was 32 years old. Ed's a retired, award-winning broadcast journalist and his column combines his four decades of MS experiences with news and comments about the latest in the MS community. In addition to writing his column, Ed is one of the patient moderators on the MS News Today Facebook, Twitter, and Instagram sites. He’s also the author of “The Multiple Sclerosis Toolbox: Hints and Tips for Living with M.S.” Ed and his wife split their time between the Washington, D.C. suburbs and Florida’s Gulf Coast, trying to follow the sun.

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Comments

Christopher Paris avatar

Christopher Paris

I'm so glad you've given attention to MS incidence at earlier ages, especially given that the earlier treatments are launched the better.
Looking back in retreospect, and discussing my case history with my neurologist, my symptoms started showing up at age 14 with neuralgias, vertigo, lethargy, leg pain, and migraines, but was dismissed as probable cold or common virus symptoms. And, given the era (late 50s, very early 60s) specialized diagnostic methods were unheard of.
I think it would behoove your editorship to follow up to address to audiences, especially during MS Awareness Month, symptoms that typify the early-age demographic.

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Ed Tobias avatar

Ed Tobias

Hi Christopher,

Thanks for taking the time to comment. Your suggestion to follow up is a good one and I'm currently working on a Part 2 on this subject.

Stay tuned,

Ed

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