Twice as Many

As an invisible illness, it’s often difficult to know if someone lives with MS. So, it comes as no surprise that many of us have a connection to MS we may be unaware of.

And the odds of our connection have just increased.


Previous studies on the prevalence of people living with MS in the United States put the figure at 400,000.

But a new study has confirmed that nearly 1 million people live with MS in this country—that’s more than twice the original number.

This news is a pivotal moment in the MS movement and brings a sense of urgency. As we continue to fuel research to better understand this disease, it raises the stakes to end MS—twice as many people now need a cure.

We asked a few people affected by this disease how they feel about this groundbreaking study. Here’s what they have to say:

Rita Joubran
Houston, TX, diagnosed 2009



“This will hopefully add to the sense of urgency to help find that cure. I believe that we are stronger in numbers—the more sisters and brothers that I have fighting with me, the better my chances of winning!”
 
Bob Vincent
Sammamish, WA, diagnosed 1994 

 

“More awareness equals more attention and effort to find and implement a real cure for those living with MS, those susceptible to it here in the Northwest and elsewhere in the world.”  

Dawnia Baynes
Compton, CA, diagnosed 2006



“I am glad to know that MS is a focus and that there is a push to get accurate numbers. The larger the number of people to study, the better we can figure out this disease and beat it."

Nicole Ramirez-Hermann
Sugar Land, TX, diagnosed 2011 
 


“Maybe if people understand that there are more of us with MS out there in this big old world then maybe there will be more understanding that not all of us sit in wheelchairs or walk funny, yet we still have this disease and live with it day in and day out and try to function at a normal person’s pace.” 
 
Ann Marie Johnson
Brooklyn, NY, diagnosed 2002



“This news definitely makes me hopeful that as more connections are made, there will be more services, funding and understanding from the community for people living with MS.”

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    18 Comments

  • Jamie Soulshine   Mar 21, 2019 11:34 AM
    I think this is great. Part of problem with MS for me is that people think if it can't kill you it shouldn't be a priority. They have trouble realizing that many of us have multiple autoimmune diseases, not just MS, and our lives are hard, almost every single day. There is so little help dealing with irreversible damage that causes every day to be difficult. Unless it's something new there's no help, even then getting Dr to believe you is hard. My MS Dr just fired me for asking too many questions. It made her feel inadequate. I still can't beleive it. I got a letter, not even a phone call.
  • Deborah Rivera   Mar 21, 2019 11:35 AM
    My daughter has been recently diagnosed with MS. I hope that with the available information regarding the number of people with this chronic disease, the more effort will be put into finding a cure.
  • Lezlie Ringland   Mar 21, 2019 11:42 AM
    I have MS, I've been in a hardcore relapse ever since I had an Infusion I am hoping to find others who LIVE with this to connect with, this...I sometimes feel very alone & helpless
  • Julianne Dyer   Mar 21, 2019 12:54 PM
    It's good to know that there are so many more people that share this awful disease with me. It helps me to know that I am not alone.
  • Andrew Friedman   Mar 21, 2019 1:13 PM
    There is a trial that has been going on for a few years. The results are overwhelming possitive. It's called, "Transcranial Direct Current Stimulation." Lets get the National MS Society to get this out of a trial and make available to the MS population. It helps relieve fatigue and it works!!! Lets go already.
  • David Kallman   Mar 21, 2019 1:28 PM
    This new number will make it far easier for businesses to justify developing new products helping people with MS. With a potential market twice the size, a new product’s target market is now doubled.
  • ESG MD   Mar 21, 2019 1:42 PM
    It is difficult for me to understand how can research find a cure for Multiple Sclerosis before first determining specific causes. Since Multiple Sclerosis is an autoimmune disease shouldn't there be more focus on what is hyper stimulating so many individuals' immune systems that result in destruction of central (not peripheral) nervous system myelin? My personal concern involves my acknowledgement there has been a tremendous increase in the number of vaccination programs being recommended to the US populace coinciding with the increase in the number of people believed to be living with Multiple Sclerosis, as reported in this article. Therefore, shouldn’t more research focus on whether the increasing number of different vaccinations people are being advised to receive and are receiving may be related to the increasing number of individuals living with Multiple Sclerosis as highlighted in this brief article written by the National Multiple Sclerosis (MS) Society?
  • Lynn Vitasek   Mar 21, 2019 2:56 PM
    Diagnosed August 2000. Now in Progressive Secondary but doing okay. Been on Avonex Since diagnosed. I am 78, and have just had a partial Mastectomy and will go on chemo next month. I am a survivor and refuse to let anything get me down.
  • Deb Small   Mar 21, 2019 3:16 PM
    My mom was diagnosed at age 69 in 1992 and now here I am at 64 with a diagnosis of MS as well. Mom received no treatment, went almost immediately to a quad cane then wheelchair and in the end lost her ability to speak. I just underwent 6 MRIs, a CT scan, spinal tap, and gave 29 tubes of blood toward finding a diagnosis. And even though I'm beginning IVMP for 3 days next week, I tested positive for myasthenia gravis as well. My entire family has been plagued by autoimmune diseases. The worst parts for me have been the unknowns, trying to plan your future and not knowing the quality of your life. I wish all out there suffering from MS the peace of God and the patience of Job.
  • KIDDER MARY ANN   Mar 21, 2019 4:31 PM
    Redox Signalling molecules has relieved from symptoms.
  • James Robertson   Mar 22, 2019 9:11 AM
    Diagnosed April 2018, couldn't get medication way too expensive. Copaxon name brand the cheapest I could get it $8,000.00 per month, the cheapest 3rd was $2,800.00 per month, still can't afford. Until the Democrats quit keeping the meds at a all time high, there is nothing we can do for MS...Test's do nothing for this disease.
  • Kathleen Hidenfeltter   Mar 22, 2019 10:14 AM
    I was diagnosed in1995 with secondary progressive when there weren’t any disease modifying drugs! I was an RN BSN! I only knew of MS as what I had witnessed when Patients were.at their worse and I was saddened that I wouldn’t be able to do clinical nursing any longer do to a severe tremors In both arms, but I was relieved that I finally knew what all my vague symptoms plus the tremors finally had a name!

    Within the last two years the FDA approved medications for secondary & primary MS which I hoped for in 95.

    With the million people in this country living with MS and with all the disease modifying meds I hope & pray for a cure! Also, doing fundraising for the NMSS I fell as with everyone’s effort a cure is coming soon!
    Forever Hopefull
    Kathleen Hidenfelter
    York, PA
  • Joan Quilter   Mar 22, 2019 4:16 PM
    I've known for decades that over a million people in the U.S. suffer from MS. Even the American Brain Foundation has been saying that every 60 minutes in the U.S., someone is diagnosed with MS. For years, I've been writing to different MS organizations to push them to take a census so that MS wouldn't be considered an "orphan disease" which gets little funding from the government. Finally, the truth comes to light . . . but as I write this, there are many more being diagnosed with this disease - there's an epidemic!
  • Libby DeFranco   Mar 24, 2019 3:11 PM
    At age 72, I have been very recently diagnosed with MS. It appears to not be a death sentence, but a 'suffering sentence' as it progresses. I think a death sentence is preferred. Good luck with finding a cure! A lot of us would really really like this! Good luck with the research!!!
  • AnnieWoodall-Parson   Mar 26, 2019 3:08 PM
    This is all great news but, my hope is that there is a way to replace the cells that are battling one another and leaving those rips and tears in my mind...… lol
  • Jennifer Wilkinson   Mar 26, 2019 5:59 PM
    I am so happy another study was done. I have had MS for over 10 years and I always found it odd the total number of people diagnosed had not gone up in 10 years. Now we have an accurate number of people with this disease and more emphasis can be put on finding a cure.

    Jen W.
    Diagnosed October 2007
  • Ronnie Simpson   Apr 5, 2019 6:51 PM
    I'm a young adult living with MS & I caution researchers to dive into this disease head first. That starts with legitimate statistics. FIND THE CURE GUYS, please.
  • Kooshma sreyams   Apr 10, 2019 1:58 PM
    👍