On the Heels of New MS Prevalence Study, the National MS Society Marks MS Awareness Week with Patient Stories

On the Heels of New MS Prevalence Study, the National MS Society Marks MS Awareness Week with Patient Stories

Spurred on by a recent multiple sclerosis (MS) prevalence study, which revealed that the number of MS patients in the U.S. is double (nearly one million) what had been previously thought, the National Multiple Sclerosis Society is marking MS Awareness Week by sharing stories of those affected by the disease.

From March 10-16, the society is using the social media hashtag #ThisIsMS to share patient and caregiver narratives, and asks supporters to post the stories on their own platforms.

This year, the society is spotlighting patient strength and resilience, as many MS patients move forward with their lives despite the challenges imposed by the disease.

In one story, Ausjia wrote about her mother Yvette, a mixed martial arts (MMA) official who was diagnosed with MS in 2014. A longtime substitute teacher and Girl Scouts leader, Yvette raised Ausjia and her brother as a single parent.

“I have watched this disease take its toll on her body and her mind, but what it hasn’t been able to do is damage her fighting spirit,” Ausjia wrote. “From muscle weakness to blurred vision, to pain and extreme fatigue, she’s told me that sometimes it feels as though this disease steals the very things that make her feel like a person.”

“Despite all of the pain and fatigue she has endured, my mother never stops trying to make a difference in people’s lives. Sometimes, I think she forgets to slow down and remember the impact that MS is having on her body,” Ausjia added.

Another story focuses on Chris, a MS patient and former competitive triathlete, who talks about the disease’s effect on his running after a lesion was found on his brain. But Chris, who has participated in world championships even after his diagnosis, also speaks of persevering.

“Every time my foot hits the ground, my eyes would jiggle and bounce. And it left me nauseous, when I would go for a run,” he said. “It’s gotten better, but at the same time it’s still there. So, I don’t get nauseous anymore but I still get irritated by it when I have to stop to read a street sign and let my eyes settle down.”

“MS is frustrating, more than anything. MS requires you to change. MS requires you to expect to change. MS is a journey into the unknown. So despite MS, I will keep riding my bike. Despite MS, I’m going to keep being me,” Chris added.

More MS stories are available at this link.

“Strong, persistent and inspiring are just a few of the words that come to mind when we think about people who are living with MS,” Cyndi Zagieboylo, president and CEO of the National MS Society, said in a press release.

“With twice as many people needing a cure, we are more driven and focused in our work so that they can live their best lives,” Zagieboylo added.

According to the National MS Society, actress Selma Blair, who has recently spoken publicly of her MS journey, is proof of the power of sharing stories about the disease.

For more information and to get involved during MS Awareness Week, visit this link.

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  1. Radonna Lindsay says:

    I was diagnosed with MS in 1998. My MS is in an ongoing bAttle with my stubborn attitude of putting up a wall to keep other MS defenders all of the battle gear needed. It is getting researcher to show that MS IS getting weaker and weaker by the day! I am not going to wait for my MS to feel like it is winning the game of Hungry Hippo! I have children not play this!

  2. Bernice Tennant says:

    For almost 4 decades I have been researching this disease. I found the hospital card from 1964 when I was 13 and taken to the hospital by my mother. I having very shocking painful attacks, not even knowing I was screaming, which we thought were seizures of some type. I suspect these were really Lehermittes. I persevered until 1990 when I was told I might have MS. I was not officially and definitely diagnosed until 2006 by Dr. Kiren Kresa Rheal, months after having a week of really bad occular migraines, at work, then waking up finding I lost sight in my left eye overnight. I got some of that sight back but there is so much more I went through. I am still struggling because after that initial diagnosis, it was changed although I had a copy of the document from the doctors office stating I had small Dawson’s Fingers. I can’t believe the up and downs. although worse for wear, I am still going, at 68.

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