MS Trust Welcomes School Year With ‘Awareness Pack’ for Children
Designed for teachers, school staff members, and students, the pack consists of information about MS and the U.K. patient advocacy group itself, stories from MS community members, and suggestions to help schools with efforts to raise awareness and support disease research. Patients and their caregivers are also asked to share their school experiences.
While MS onset usually occurs in people between 20 and 40 years old, around 5% of the estimated 110,000 U.K. residents — or 5,500 people — living with MS are reported to experience their first symptoms before age 16, the MS Trust reports.
“It’s only recently that MS has begun to be diagnosed in children — it was thought to be an ‘adult’ disease, and childhood symptoms were often attributed to other conditions or ignored altogether. It’s now increasingly understood that MS can strike at any age,” the organization states in its announcement. “Some symptoms, such as problems walking, cognitive problems and difficulties with speech and swallowing, can be embarrassing and make school life tough.”
The MS Trust pack also calls attention to children who have a family member with MS, and who often serve as caregivers.
“MS is an unpredictable disease, so children living with MS in the family don’t know what they are to encounter from one day to the next,” the resource states. “It can be hard to live a normal life.
“Many act as young carers for their parents and the weight of this responsibility can cause stress, tiredness, restricted social time and poor performance in school. It is not always possible for these children to express their own feelings and many do not know where to turn for support,” the organization notes.
Jenna Chudasama also shares her experiences working as a teacher with a “an invisible condition.”
“I do believe that students have a greater understanding that illnesses can be invisible. I also hope that they have been encouraged to open up about illnesses in general … to remove the stigma so often attached to being ‘different,’” Chudasama states.
The awareness package includes a student called Alex, who raised funds and awareness for MS at her school during MS Awareness Week in the U.K. after her mother was diagnosed with the disease.
“It was scary to think that Mum had a disease that could not be cured,” Alex said. “I didn’t know much about it at first, I just knew that my mum was always a bit clumsy.”
Suggestions to raise awareness at school include using MSTV, a dedicated YouTube channel featuring MS-related videos for young people, and a Kids’ Guide to MS, written for students ages 6 to 10. Other ideas include establishing an “information stand” about MS and presenting a “learning activity” to help people understand what it feels like to experience disease symptoms.
Fundraising suggestions to support the MS Trust include putting on a school play, organizing bake sales, and packing bags in supermarkets in exchange for donations.
“Without the support from people in local communities choosing to fundraise for us, we would not be able to continue our work,” the organization noted.