“My destiny is not defined by other MS patients.”

Darja, 29 yrs, Slovenia

Multiple sclerosis (MS) strikes each individual differently; it’s a complex disease with thousand faces. MS is also a condition which nowadays accompanies more than 2,300,000 people around the globe (1).

»I have always loved running – and I was a good runner!”

But her line wasn’t straight forward… anymore. She was 17 years old: “It felt like I forgot how to use my legs properly.”

Darja’s PE teacher suggested she pays a visit to the family doctor.

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MS affects more women than men; twice as much.

“It’s so important to know, despite MS, you’re in charge of your body, not her.”

Darja defines MS as her: “Her who invades your brain and bites your myelin.”

I’ve known Darja for years, but honestly never really paid any attention to her as someone who’s battling MS. She’s been the girl who modelled our art study projects; high fashion face, gentle profile, blue eyes.

A few years later we met again at our friend’s wedding. I wanted to see what her body, and her mind, are capable of so… Two weeks later, we are now doing air squats, kettlebell deadlifts, banded walks and more.

“Inflammatory demyelinating condition,” that’s what the doc’s paper said.

»I googled inflammatory demyelinating condition and I remember I couldn’t find a lot of info, but I found the word multiple sclerosis.«

After not being able to hold a one leg stance, her MD sent her through MRI, lumbar puncture, evoked potential and various blood tests. “It all happened in puberty when you don’t really care what’s happening with your body. What matters is that you look and act cool. And I was 18 when I was officially diagnosed with multiple sclerosis.«

The term multiple sclerosis actually stands for many scars. MS is a demyelinating condition, meaning myelin, a material which allows a nerve to transmit its impulses, is being damaged. The areas where myelin is lost appear as scars: that happens in the spinal cord and the brain.
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Image: khanacademy.com

Nerves lose the ability to conduct an impulse which results in various symptoms of MS. For Darja, not running in a straight line was the first one.

“You can live in denial, but I never did.”

On the EDDS scale, The Kurtzke Expanded Disability Status Scale, which goes from 0-10, Darja currently sits at 4.5.

“If I go to the woods, I take my trekking poles with me, but it really depends on the daily mood, and the weather.”

4.5 stands for fully ambulatory without aid, up and about much of day, able to work a full day, may otherwise have some limitations of full activity or require minimal assistance. Able to walk without aid 300 meters (2).

“As a kid I loved skiing. The diagnosis kind of me made give up on that, but still, since then I went on skiing holidays twice. I guess now I’ll just have to find an alternative to it.”

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First signs of MS vary from a person to person. Most often, balance and coordination are the first things that go off. Other symptoms include blurred vision, weak limbs, tingling sensations, unsteadiness and fatigue, also bladder and digestion problems as well as psychological and cognitive issues.

“There was a lot of failure, like falling down physically, and emotionally. And there’ll be more of those. But all in all I live a normal life.”

“Maybe my life is a bit more adventures than the lives of others.”

MS is associated with an adjective not a lot of people want to hear – progressive: “As I said, none of the fellow MSers reflects my destiny. It’s only me who can fight her. It can get progressively worse or I can magically get healthy. No one knows what tomorrow brings.”

For the year and a half Darja has been using Tysabri, a biological prescription medicine administered intravenously once a month. As she says, a pretty fancy way of getting a dose. Before that she’s been on Rebif.

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In 2007 first genes liked to MS were discovered. Since then scientists identified at least 57 of these genes. Neural repair might be the future of MS treatment. But for now, the only solid future Darja is certain about it a project she’ll be putting online this summer: a resource for all MSers on health, nutrition, bureaucracy info along with personal stories.

»I get a lot of questions about this optimism. Of course, this is not the only image of me.«

Thank you Darja.

Questions: polona@fondastrong.com

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Sources:

(1) MS international federation, www.msif.org
(2) www.va.gov/ms