Man Travels To Fight Rare Disease - KFYRTV.COM - Bismarck, ND - News, Weather, Sports

Man Travels To Fight Rare Disease

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Feb. 28 is National Rare Disease Day. Tonight, medical reporter Mark Charter introduces us to a man who's suffering from CIDP, a condition that affects only a small number of people, and is now traveling across the globe for a treatment.

"My immune system has decided to attack my nervous system," says Bismarck resident Jaimie Stewart.

Stewart suffers from a condition called Chronic Inflammatory Demyelinating Polyneuropathy, (CIDP) and it only affects about one in one hundred thousand people.

"Flu-like symptoms, muscle spasms, electrical zaps from the nerve endings not firing correctly," says Stewart.

In order to feel better, he has to infuse himself twice a week by doing a plasma exchange.

"I take four little needles, poke 'em into my belly, hook it up to a syringe and wait four hours," says Stewart.

Because of the illness, Jamie has had to miss countless days of work, and even small errands around the house have become a challenge.

"My life has really turned into a game of energy management," he says.

After being declined from the CIDP clinical trial at Northwestern University in Chicago, he started researching other options and finally got some good news. He was accepted into a program in Moscow, Russia.

"I'm sitting at work, literally tears rolling down my face I'm so happy."

Stewart's treatment will cost around $35,000. It uses his own stem cells and high doses of chemotherapy to reboot his immune system.

You show up in Russia, you go through a pre-treatment phase, which they test you out to make sure that there are no underlying diseases. And then once that happens. Boom. You're in and going.

Stewart says he will be in Russia for about a month, and won't find out the full results from his treatment for almost two years. But if the treatment does in fact work, he can expect a full remission.

If you'd like to follow Jamie through his experience in Russia, you can check out his blog at  jstew34.tumblr.com.

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