As their community turns one year old, we interview the Multiple Sclerosis Association of America (MSAA)

8 August 2017 

How many people have MS globally?
Many experts estimate that 2.5 million people worldwide have been diagnosed with multiple sclerosis (MS).

What are some of the main challenges that people with MS often have?
Individuals with MS are faced with many challenges in several areas of their life. The physical and emotional symptoms of MS may have the greatest impact. As a result, people often need to limit daily activities and time spent with family and friends. The side effects from medications can also be challenging. Families are often affected financially, as expenses can be high and not everyone diagnosed with MS remains employed. In terms of relationships, some individuals may not be as comfortable going out socially, and others may experience problems at home as the symptoms and other challenges affect how they interact with loved ones.

MS at times can be very challenging, but this is where organizations like MSAA can make a big difference! Through our free programs and services, plus our experienced and supportive Helpline specialists, we can help reduce the challenges by improving lives today. Please call MSAA’s Helpline at (800) 532-7667, extension 154, or visit our website at mymsaa.org for more information and assistance.

We believe that bringing people together with the same health conditions can be life changing; do you find that in your community? If so, how?

Many of the symptoms of MS are “invisible symptoms”, meaning that often times, the only person who is truly aware of all the ways that MS is affecting the body is the person who has MS. We have seen numerous occasions where My MSAA Community members will post about a strange symptom that they are feeling, questioning whether or not it is related to their MS. Other members will then comment about feeling something similar and sharing how they deal with it, or overcome it. This not only fosters a sense of community, but in talking with others who have the same health condition, our community members validate each other’s symptoms and experiences in ways that family members and friends might not be able to do.

Why is online support so important?
A number of members of our My MSAA Community have expressed that they feel physically isolated, either by choice or by circumstance, because of their MS symptoms. Our online community offers members who feel isolated an opportunity and a safe space to at least virtually connect with others who might be in the same position and share their experiences.

What kind of support do you see being offered in your HealthUnlocked community?​
Most often, members of our online community will share their experiences with others who have either asked for advice or are sharing their frustrations.  Sometimes, members are offering emotional support to let people know that they are not alone in their MS journey. Other times, members offer strategies for dealing with a problematic symptom, or navigating insurance and disability benefits. Occasionally, members will also share artwork, knitting and other fun craft projects with the community as a way to keep conversation positive and highlight the wonderful work of artists living with MS!

What are the main topics of conversation in your community?
Most of the conversations in the community are about dealing with a specific type of symptom, asking for advice on coping with a specific symptom and sharing experiences about taking certain MS medications. In March of 2017, the FDA approved the first MS drug that can be used to treat two different types of MS, and the first MS drug to be approved as a treatment for primary-progressive MS. This was very big news for the MS community and led to a lot of posts about the approval.

What have been some of the most memorable My MSAA Community moments of the past year?
The three biggest moments for My MSAA Community over this past year have been:

  • When we first reached 1,000 members of the community
  • When we brought on our three Community Ambassadors who have all done a wonderful job representing the community and welcoming new members
  • When we held an Ask Me Anything (AMA) session with one of our MS experts during this year’s MS Awareness Month in March

What difference do you think the My MSAA Community has made to people with MS in the last year?
We think one of our online community members said it best in one of their posts: “Just over 6 months ago, I was still really, really, ok really, ticked off! At life! At people, at pretty much everyone and everything! Most of all I was ticked at this thing in my body that seems to be taking over! And I couldn’t fix it!!! Then I stumbled across this community. It was there when I needed it! You all were here when I needed you! You helped me learn acceptance. Even though I’m still ticked some days, it’s not so bad. I know I’m not alone in this! We are all in this together. Thank you to be best Community ever.”

What is your favourite thing about the My MSAA Community?
Our favorite thing has to be knowing that this online community has allowed hundreds of individuals with MS to connect with each other on a personal level every single day! We understand the importance of having an outlet to share challenges, ask for support and offer advice. We hope that this community continues to grow and be a friendly resource for all members of the MS community looking to make a connection or a friend who understands what they are going through.  

How do you use your community to support the needs of your organization?
My MSAA Community offers us the opportunity to have a direct conversation with individuals affected by MS to see what some of their main concerns are. Our mission is to improve the lives today of people with MS and those close to them – My MSAA Community provides further insight into how we can continue to better serve individuals with MS.


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