Multiple sclerosis support groups and care staff

Multiple sclerosis (MS) support groups offer people a chance to connect with others who are having similar experiences. They can be a source of empathy, encouragement, and isolation prevention.

Talking to people who have the same condition is one of the most powerful things a person with MS can do, according to the Multiple Sclerosis Foundation (MSF).

Almost anyone can join an MS support group as it is available both in person and online. People can choose a route to join based on what is most convenient for them.

Read on to learn more about MS support groups and support resources for caregivers.

There are many places on the internet that people with MS can connect with others who have the disease. Some options include the following.

National Multiple Sclerosis Society Facebook community

The National Multiple Sclerosis Society (NMSS) has a Facebook community of over 7,000 members. It’s a place where people with MS can ask and answer questions. The forum also provides a safe space for respectful conversation to provide and receive support.

The information that people share in the community does not necessarily reflect the views of the NMSS, so the organization recommends that people research any advice they receive before trying it out.

In addition to the forum, the NMSS also lists other online services. These include:

  • MS Friends: One-to-One Conversations: This group connects a person with a volunteer living with MS.
  • eSupport health: These groups meet weekly via online video calls moderated by licensed therapists with MS expertise.
  • Happy the app: This app provides emotional support over the phone around the clock.
  • Edward M. Dowd Personal Advocate Program: Instead of a support group, this option provides intensive case management services to people with MS who do not have a support system or who have complex needs.
  • MS navigators: This program connects people with MS with the information, resources, and support they need.

My MSAA community

The Multiple Sclerosis Association of America (MSAA) offers My MSAA Community, a peer-to-peer online forum. It is open to everyone with the disease and their family members or carers. People can contribute to an ongoing conversation or start their own conversation.

In addition to the online community, MSAA has a toll-free hotline, a live chat system and an email address that people can use to receive advice from experienced specialists.

Ancan MS support group

The Ancan MS Support Group is a monthly peer-led group that a person can join online or over the phone. Its goal is to help people with MS cope with the physical and emotional challenges of the disease.

Members of the group have the opportunity to share insights and share compassion with others who understand and face similar challenges. The group meets every second and fourth Tuesday of the month at 8:30 p.m. Eastern Standard Time.

Healthline Facebook Community

Healthline has a Facebook community for people with MS called Living with Multiple Sclerosis. It’s a supportive forum where people can interact, ask questions, and share tips.

In addition, it is a source of trustworthy information that can help someone on their MS journey. Healthline professionals post links to articles that contain the latest research and tips on dealing with MS.

MS world

Like other online support groups, MS World provides a forum to connect with others. It offers a wide range of sub-forums divided into different categories, making it easy for members to access very specific information.

Some of these categories include:

There are fewer personal support groups for MS than there are online groups. However, the following two organizations have local groups in many areas of the United States.

NMSS

The NMSS has a search tool that people can use to find an affiliated group in their area. Each group lists their contact information and the dates of their meetings. Some also have additional benefits or features.

Joining these groups has the following advantages:

  • gain emotional support
  • help others
  • Learn new strategies for coping with MS-related problems

Network of the independent MS Focus support group

Another personal option is through MSF’s MS Focus Independent Support Group Network. It provides a search function that people can use to find local groups in their area. Each group on this network is independent, but MSF provides them with structure and guidance.

Benefits of joining include:

  • encouragement
  • education
  • Inspiration and positivity
  • Tips to survive difficult days

People caring for someone with MS can face their own challenges. Although family members often want to care for a loved one, caring for them can be hard work. It can affect a person’s finances, energy levels, and physical and mental health.

But there is also support for family carers. Some support groups for people with MS welcome the participation of family members and caregivers. These include My MSAA Community and MS World.

There are also some support groups and services specifically for caregivers, including:

  • NMSS self-help group for family carers: This MS-specific support group provides a place for partners, children, siblings, and parents of people with MS to share resources and concerns. This is a personal group that meets every second Tuesday of the month in Silver Creek, MD.
  • Caregiver Action Network: This organization has an online forum where caregivers can ask and answer questions from people in all health conditions. The forum has sub-categories that focus on different topics such as how to deal with depression by nurses and how to deal with healthcare professionals.
  • VA support program for nurses: The US Department of Veterans Affairs (DVA) provides information and a helpline for people caring for a veteran with MS. The local DVA medical centers also have a licensed professional who acts as the caregiver coordinator.
  • CareNav: The Family Caregiver Alliance offers the CareNav program, which provides support and resources for caregivers of adults with chronic illnesses.

In-person and online support groups provide a way for people with MS to connect with others who understand their experiences. The NMSS and MSF websites enable people to find local MS support groups in the US

Alternatively, people can join online groups accessible anywhere with an internet connection. There are several choices available, including the NMSS Facebook Community, My MSAA Community, and the Ancan MS Support Group.

There are similar resources available for caregivers that cater to their specific needs. These include the Caregiver Action Network and CareNav.

About Ellen Lewandowski

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