Learning that your child has multiple sclerosis (MS) can trigger feelings of fear, sadness, and uncertainty. If you’re a parent or caregiver to a child or teen living with MS, finding emotional support for yourself is critical so you can be there for your child.
Pediatric MS is relatively rare, so joining a pediatric MS support group can help you feel less alone. It can also provide an outlet for your child or teen to connect with other kids living with MS, since it isn’t always easy to meet other children with the condition.
To help you get started, we’ve included a roundup of support groups, links to their websites, and a brief description of what each has to offer.
A quick online search will pull up several support groups for MS, but only a few are specific to pediatric MS. The good news is many of these broader MS groups have subgroups dedicated to parents and caregivers.
Types of support include:
- online support groups
- Facebook community pages
- in-person groups
- mental health counseling
- helplines (via telephone)
In order to determine the most appropriate type of support your child might need, talk with them to learn what their concerns are and what they might benefit from talking with others about.
These subjects may range from living with their physical limitations, side effects, or symptoms to what activities they can take part in or how to discreetly get extended time accommodations for things like school tests (e.g., the SAT).
It’s important to keep in mind that many of the following groups are not monitored by a physician. Children can seek out resources, but they shouldn’t connect or interact with anyone unless supervised by a parent.
Due to COVID-19 restrictions, many organizations are offering only online support groups. That said, several groups still manage online tools to help you locate in-person meetings and other support in your area.
If you need information and support about navigating the challenges of MS, you can contact the National MS Society’s MS Navigator. Skilled, compassionate professionals can connect you to emotional support resources specific to family and caregivers.
Call 800-344-4867 or connect online.
NMSS find doctors and resources tool
The National MS Society (NMSS) offers a find doctors and resources tool that can help you locate doctors and other resources in your area.
Just select “emotional support” (category), “caregiver and family support” (support type), your ZIP code, and the distance you’re willing to travel.
NMSS support group search tool
The NMSS’s support group search tool offers a comprehensive resource for navigating the challenges of MS. On this page, you will find a link dedicated to emotional support resources, including in-person support groups.
When you click on the “support groups” link, you’ll find information about local and national support groups. From here, the tool allows you to search by state and ZIP code.
Once in the designated location, you’ll see meeting dates and times, along with the type of support group and town or city.
For example, the Parenting Chronic Illness Community-Based Support Group meets in Seattle once a month and is described as a support group for parents of children living with health challenges from MS.
Oscar the MS Monkey
Oscar the MS Monkey is a nonprofit organization created by Emily Blosberg to provide a place for kids with MS to connect with other kids. The website also features a page for caregivers and parents with information and support.
Healthline: Living With Multiple Sclerosis
Healthline’s Living with Multiple Sclerosis Facebook page offers links to articles, support, and other content to help navigate life and support a loved one with MS.
Multiple Sclerosis Discord
A volunteer-led online support community, Multiple Sclerosis Discord offers:
- 24/7 live chatting
- one-on-one calls with a volunteer for additional support
- community events like the Vent Chat, where you can share things going on in your life
The group offers peer and group support for people with MS, as well as a separate support channel for family or people living with MS.
The group uses Discord, an online communication platform, to meet up.
My MSAA Community
The Multiple Sclerosis Association of America (MSAA) operates a community page, My MSAA Community, dedicated to all things MS.
While not exclusive to pediatric MS, it does cover topics related to parenting children with MS.
To join, click on the white “Join” tab on the My MSAA Community website.
National MS Society Community
The National MS Society Community Facebook page is a private group offering support and ways to connect with others affected by MS.
Since it’s private, you’ll need to request to join. There are over 4,500 members.
Pediatric Multiple Sclerosis Alliance
When it comes to support for parents and caregivers, the community at the Pediatric Multiple Sclerosis Alliance (PMSA) Facebook group is full of input, information about referrals, advice, experience, and, of course, comfort.
The families in this support group span the globe, from the United States to the United Kingdom, India, Germany, Iceland, and many other areas.
While this group is one of the most comprehensive resources for pediatric MS, it’s also a place for families and caregivers to share challenges, victories, trials, and triumphs.
This group is private. To join, click on the orange “Join Group” tab on the Facebook page.
MSFriends: One-on-One Connections
The MSFriends: One-on-One Connections helpline connects you via phone with trained volunteers living with MS. The paired program allows you to talk with a support person who knows firsthand what it’s like to have MS.
You can call 866-673-7436 (866-MSFRIEND) any day of the week from 7 a.m. to 10 p.m. MT.
Counselors and mental health specialists offer individual, couples, and family counseling. Some also facilitate group counseling sessions.
The following online locators can help you find a counselor, psychologist, psychiatrist, or other mental health expert in your area:
Multiple Sclerosis Foundation’s MS Focus
Support for pediatric MS is not always easy to find. Although some groups for parents and caregivers exist, there’s a need for more comprehensive support.
If you have an interest in starting a support group for families parenting a child with MS, contact MS Focus.
They have a support groups department that can assist you with starting a group. They also offer an online tool to search for general MS support groups by state.
Whether you have questions about specific treatment options, such as disease-modifying therapies (DMTs), or you’re just looking to connect with other parents, online and in-person support groups and organizations dedicated to pediatric MS treatment can help.
While not a substitute for medical recommendations, these groups and organizations are a valuable resource for parents and caregivers looking to find information about:
- treatment protocols
- other interventions
For treatment-specific information and support, consider reaching out to the following groups and organizations:
- your child’s treatment team
- your local hospital
- International Pediatric Multiple Sclerosis Study Group
- United States Network of Pediatric Multiple Sclerosis Centers
A note on approved treatments: In 2018, the FDA approved oral MS therapy Gilenya (fingolimod) to treat relapsing MS in children and adolescents 10 years old and over.
This is the only FDA-approved treatment for this age group.
Pediatric MS presents challenges to both you and your child.
The good news? Several resources are available, both online and in-person, that provide information, support, and guidance through this journey.
Reaching out to other families through a patient organization or joining a parent support group can help you feel less alone and more hopeful of improving life for you and your child.