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MS Can be a Kids’ Disease, Too – Part 1

MS Can be a Kids’ Disease, Too – Part 1

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 400,000people 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 simply 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.

Emily travels to MS events to connect with young MS patients and to help them connect with each other. Along the way she created a stuffed monkey named Oscar to travel with her. Oscar represents all young people with MS and he has his own Oscar the MS Monkey Facebook page. Oscar then became so popular that Emily had to make more monkeys. She makes each of them by hand and distributes them worldwide to kids with MS.

This has all now expanded into an MS “Buddy Bash,” a gathering of young MSers to share their experiences face-to-face. The first of these was held earlier this year when three families, each with a child with pediatric MS, 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. There are some activity camps available for kids with MS. Two that I’m aware of are Champ Camp in Texas and Teen Adventure Camp in Rhode Island.

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.
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.

Diagnosing and treating pediatric MS

Diagnosing and treating multiple sclerosis in a youngster is not the same as it is for an adult. It’s more difficult, yet it needs to be done more quickly. Next week, in Part 2, I’ll take a look at why that’s the case.

(A version of this first appeared as one of my columns on www.multiplesclerosisnewstoday.com)

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