We’re all familiar with the yearly observance of MS Awareness Week and MS Awareness Month to raise awareness about multiple sclerosis. Considering that so many rare diseases, such as Graves’ disease or Ehlers-Danlos syndromes, go largely unnoticed, the MS community is blessed with its fair share of promotional campaigns. That said, a larger portion of the attention is paid to the relapsing-remitting form of MS, leaving progressive MS under a more mysterious cloud. It’s time to change all of that.
Today, March 28, the MS community comes together to observe the first-ever Progressive MS Day (#ProgressiveMSDay) to highlight resources, programs, and services needed for the more debilitating forms of MS. It’s a way for everyone to demonstrate their support for those with progressive MS, to educate others about the condition, and to place an emphasis on the need for more research to advance care and reduce disability.
Around the country, many MS patient advocacy organizations, MS centers, and the pharmaceutical company Genentech are doing all they can to raise awareness about Progressive MS Day. What’s even more exciting is that a few states will proclaim March 28 as Progressive MS Day, including California, Georgia, Michigan, and Colorado. My hope is that next year many more states will join in to declare this proclamation.
Progressive MS Day is also a time for the MS community to share personal stories about living with progressive MS, and an opportunity for loved ones and other supporters to show their love with a Progressive MS Day Facebook profile frame. Join in the conversation across all social media platforms by using the hashtag #ProgressiveMSDay.
I urge you to take a look at this beautiful yet honest video created by Genentech about an amazing woman, Jennifer Digmann, who lives with progressive MS. The video details how she faces her daily struggles with courage, intelligence, and laughter. Her MS transitioned from relapsing-remitting to progressive, but with her beloved husband Dan (who lives with relapsing-remitting MS) at her side, they refuse to let MS stop them from leading a good life. Their love is palpable, and you can see how they not only live the best life possible but also give back to the community.
I hope you will share the news about Progressive MS Day and take an active role by sharing your story, changing your Facebook profile picture frame, and using the hashtag #ProgressiveMSDay.
The progressive community deserves and needs our support. I hope and pray that in my lifetime there will be better research that leads to more medications for the progressive MS community.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.