|
I am a parent
of a child with MS
 |
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. The Young Persons with
MS Network can help you and your family live well and provide
further contacts for assistance.
Young Persons with MS: A Network
for Families with a Child or Teen with MS
Young Persons with MS: A Network for Families with a Child or
Teen With MS 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 five 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 (English
only at this time).
Teleconferences for parents of children with MS are offered
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.
back
to top
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.
back
to top
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.
back
to top
Connecting families
The Young Persons with MS Network brings together families who
are dealing with similar challenges or concerns through the
phone and Internet. The Network has developed an e-mail list
group where parents can connect with each other to share concerns
and information, and develop a support network. 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 (US). 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 (see below).
back
to top
Join / contact the Network
For more information on childhood MS, specific programs and
resources, or to join the Young Persons with MS Network, please
contact or forward this online
form or this PDF
form to:
National Multiple Sclerosis Society
Toll Free: 1-866-KIDS-W-MS (1-866-543-7967)
Email: childhoodms@nmss.org
back
to top
Contact us
For more information on resources specific to Canada, please
contact:
Coordinator of the National Information Resource
Centre
Multiple Sclerosis Society of Canada
175 Bloor Street East, Suite 700, North Tower
Toronto, ON M4W 3R8
Toll free within Canada: 1-866-922-6065
Email: kidswithms@mssociety.ca
back
to top
Other Resources
The Hospital
for Sick Children - The Paediatric MS Clinic
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 2005
Research Summaries.
back
to top
|
