Multiple sclerosis in children is not common and the needs of children with MS, their parents and siblings are unique. Multiple sclerosis may affect the entire family, including the ways you communicate with each other, your relationships and daily activities.
Parents have real concerns about their child’s health, education and future. As young children and teenagers are being diagnosed with a disease that was once thought to strike only adults, it is essential that families find support they need and avoid feeling isolated and alone.
The MS Society has expanded its programs and resources to provide services to families in this situation. Children and Teens with MS: A Network for Families can help you and your family live well and provide further contacts for assistance.
Children and Teens with MS: A Network for Families is a support network that provides multiple program options for families living with a child or teen who has been diagnosed with multiple sclerosis. This program is a collaboration between the MS Society of Canada and the National MS Society (NMSS) of the United States.
The Network provides a wide spectrum of programs and resources for children with MS (18 or younger) and parents of a child or teen with MS:
» Education
The Young Persons with MS Network provides educational programs and written materials for children and their parents about childhood MS.
Kids Get MS Too: A Guide for Parents Whose Child or Teen has MS is a handbook containing articles on a variety of topics written by specialists in childhood MS, and includes resources and information to further guide parents with regards to more specific topics.
Mighty Special Kids is an activity book for kids aged 5 to 12 who have multiple sclerosis. The book helps families talk about MS, helps children understand how MS affects their daily life and offers suggestions for discussing MS with friends and schoolmates. The booklet also includes games, interviews with kids who have MS, and family activities. You can also link to the interactive version on the National MS Society’s website. While the booklet is available in English and French, the online version is available only in English.
Teleconferences for parents of children with MS are offered approximately every other month to introduce families to specialists working in the field of childhood MS. Topics include research, treatment, cognitive issues, and children’s rights within the school system. Contact us for information on the next parents’ teleconference.
» Information and referral
Parents can receive information about MS and local resources from the division or chapter in their area. Call your MS Society division office at 1-800-268-7582 or visit In Your Community to locate the nearest MS Society office. For information on childhood MS, families can contact us at 1-866-922-6065 to learn more about the Network and other available resources.
Kids Get MS Too – Questions and Answers is an information guide on pediatric multiple sclerosis for parents of children with MS, MS Society staff and volunteers, health professionals and others with an interest in this topic.
» Emotional support
Parents can receive emotional support through a variety of programs and services including individual parent or family support and group support programs. Professionally led support groups are offered on the phone for parents interested in talking with other parents about having a child or teen with MS. Short-term telephone counselling with a licensed social worker is also available to families living with a child with MS. To access this service, join the Network.
» Connecting families
Children and Teens with MS: A Network for Families brings together families who are dealing with similar challenges or concerns through the phone and Internet.
Parents can connect with each other to share concerns, information and support through an email list serve. Join the Network to register with the parents group.
Teens have the opportunity to join Ithink Email Group, an email group for teens with multiple sclerosis. The Ithink Email Group is managed by the National MS Society (U.S.). To ensure everyone's safety while participating in the e-mail group, the message traffic will be moderated. The group is closed to outside posters. For more information or to sign up for the e-mail group, please join the Network.
» Summer Camp Adventure
The MS Society offers a week-long camp each summer just for kids and teens with MS. Children and teens come from all across Canada for this incredible camp experience that includes activities like sailing, crafts, theatre, whitewater rafting, an overnight trip and more. The camp is fully accessible, with fun counselors and on site pediatric MS nurses. Campers get to choose which activities to participate in. The emphasis is on having fun together and leaving behind the stresses associated with living with MS.
For information on multiple sclerosis, what causes it and other information resources, visit the Multiple Sclerosis section.
Visit our Research section to learn more about our MS research program including the study about the Development of MS in children in the 2008 Research Summaries.
Multiple sclerosis in children is not common and the needs of children with MS, their parents and siblings are unique. Multiple sclerosis may affect the entire family, including the ways you communicate with each other, your relationships and daily activities.
