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Anticipatory Grief in Duchenne Families
Grieving what is not yet lost is common in Duchenne. What anticipatory grief is, why it happens, how it shows up, and ways families and support can help.
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#mental-health
All articles and blog posts tagged #mental-health.
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Grandparents and the Extended Family in Duchenne
A Duchenne diagnosis affects grandparents and extended family too. How they experience it, the support they can offer, and how to navigate help and boundaries.
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Fathers and Duchenne: A Father's Experience and Role
Fathers of children with Duchenne face the diagnosis in their own way, and their needs are often overlooked. A father's experience, role, and support.
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Connecting With Other Families: Peer Support in Duchenne
No family should face Duchenne alone. How connecting with other families helps, where to find peer support, and how to use online communities wisely.
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Nighttime Care and the Caregiver's Sleep in Duchenne
Duchenne nights can be broken by repositioning, discomfort, and breathing support. How to make nights easier for the child and protect the caregiver's own sleep.
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Learning, Attention, and the Neurodevelopmental Profile in Duchenne Muscular Dystrophy
Duchenne can affect the brain as well as muscles. The learning, attention, and behavioural differences linked to DMD, why they happen, and how assessment helps.
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Supporting Independence and Self-Advocacy in Teens With Duchenne
As children with Duchenne become teenagers, supporting independence and self-advocacy matters as much as medical care. How families and teams help them lead.
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Personal Care and Dignity as Duchenne Progresses
As Duchenne progresses, children need more help with personal care. How to support washing, dressing, and toileting while protecting privacy and dignity.
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Finding and Accepting Help: Respite Care for Duchenne Families
Respite care for Duchenne families: what respite means, the types available, how to find and fund it, and why accepting help protects the whole family.
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Balancing Work and Caregiving in a Duchenne Family
How caregiving for a child with Duchenne affects parents' employment and income, and practical ways to protect both work and the care a child needs.
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Explaining Duchenne to Family, Friends, and Your Community
Explaining a Duchenne diagnosis to grandparents, friends, classmates, and the wider community: what to share, when, and how to handle reactions and advice.
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Siblings of Children With Duchenne Muscular Dystrophy
Siblings in DMD families: what they often experience, what helps, and how parents and care teams can support them through the long course of the disease.
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Friendships and Social Life for Children With Duchenne
Social life in DMD: peer relationships, summer camps, hobbies, and what families can do to keep a child connected as the disease progresses.
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Pain Management in Duchenne Muscular Dystrophy
Chronic pain in DMD is common, under-recognized, and treatable. A practical overview for families and care teams.
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Talking to a Child About a Progressive Disease
Age-appropriate, honest conversations about Duchenne with the child who has it: what helps, what to avoid, and when to ask for help.
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How Duchenne Reshapes Family Roles
Duchenne muscular dystrophy quietly redraws who does what at home, with consequences for partners, siblings, and grandparents.
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Mental Health Duchenne Muscular Dystrophy Guide
Mental health in Duchenne muscular dystrophy care: patients, parents, siblings, anxiety, depression, behavior, and caregiver strain.
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Caregiver Burnout in Duchenne Families
Caregiver burnout in Duchenne muscular dystrophy is common, predictable, and treatable. Recognizing the signs early protects the whole family.