Support for George (Myotonic Dystrophy)
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Myotonic dystrophy type 1 (MD1), one of the two types of Myotonic dystrophy, is an inherited type of muscular dystrophy that affects the muscles and other body systems. It affects most parts of the body including the heart, lungs, eyes and nervous system and more.
DM1, which George has, begins in early childhood (but not at birth) and typically presents before the age of 10. The first symptoms tend to be more behavioural and cognitive than physical.
Due to this illness, George struggles to cope in school and can have regular breakdowns throughout the day, sometimes the cause of these outbursts is unknown. George wears ear defenders to cope with sound and also needs additional support in the classroom.
Although George has just been diagnosed, his mum is already anxious about how she will support her child. She realises the importance of preparing for the future as it is a condition that progresses. His mum would like to get a heart sensor watch so that she can start to monitor George's heart, as this is something that is affected by the condition.
In the future, George may need assistive devices, such as braces, crutches, or wheelchairs that help protect and support his body to prevent injury.
He will also need physical and occupational therapy. A physical therapist will teach him exercises to help improve movement and strength and decrease pain.
Thank you for your support in advance.
DM1, which George has, begins in early childhood (but not at birth) and typically presents before the age of 10. The first symptoms tend to be more behavioural and cognitive than physical.
Due to this illness, George struggles to cope in school and can have regular breakdowns throughout the day, sometimes the cause of these outbursts is unknown. George wears ear defenders to cope with sound and also needs additional support in the classroom.
Although George has just been diagnosed, his mum is already anxious about how she will support her child. She realises the importance of preparing for the future as it is a condition that progresses. His mum would like to get a heart sensor watch so that she can start to monitor George's heart, as this is something that is affected by the condition.
In the future, George may need assistive devices, such as braces, crutches, or wheelchairs that help protect and support his body to prevent injury.
He will also need physical and occupational therapy. A physical therapist will teach him exercises to help improve movement and strength and decrease pain.
Thank you for your support in advance.
Organizer
Amy Skentelbery
Organizer
