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Storytelling, Awareness, and the Race Against Time in Duchenne Muscular Dystrophy
A conversation with advocate Thomas Bartlett on why storytelling and public awareness, as much as science, drive funding, policy, and access in Duchenne.
Tag
#families
All articles and blog posts tagged #families.
Articles
Article
The Same Disease, Different Countries: What Duchenne Parents in America and Georgia Reveal About Access, Hope, and Time
A reported comparison of how Duchenne families in the United States and Georgia experience access, advocacy, and the urgency of time.
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When Time Is Stealing Your Child: A Journalist's First Encounter With Duchenne
A journalist's first-person account of interviewing parents of children with Duchenne muscular dystrophy in Georgia, and what the conversation revealed.
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Children Waiting While Time Runs Out: The Human Cost of Duchenne in Georgia
Inside the Duchenne movement in Georgia: families, children, daily life, and what it costs to wait.
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Two Mothers, Two Realities
A reported piece on Duchenne Muscular Dystrophy, access to treatment, and the role information plays in deciding who receives care in time.
Blog
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Finding and Choosing a Duchenne Care Center
Expert, multidisciplinary care improves outcomes in Duchenne. How to find a specialist center, what good care looks like, and when to seek a second opinion.
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Making Informed Decisions Together With Your Duchenne Care Team
Duchenne care involves many decisions. How to become an informed partner, understand the options and trade-offs, and share decisions well with the care team.
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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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Gastrointestinal Problems in Duchenne: Reflux, Slow Digestion, and Gut Comfort
Duchenne can affect the gut as well as the limbs. Reflux, slow stomach emptying, bloating, and constipation: why they happen, and how to keep the gut comfortable.
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Managing Daily Medications at Home in Duchenne
Duchenne often means several daily medicines. How to organise doses, avoid missed ones, handle school and travel, track side effects, and keep it manageable.
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Holidays and Special Occasions With Duchenne
Birthdays, holidays, and celebrations matter for every child. How families with Duchenne adapt special occasions so a child can take part fully and enjoy them.
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Understanding Creatine Kinase (CK) in Duchenne
Creatine kinase, or CK, is a blood marker that is very high in Duchenne. What CK is, why it rises, what the number does and does not mean, and how it is used.
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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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Fat Embolism Syndrome: A Serious Risk After Fractures and Falls in Duchenne
Fat embolism syndrome is a rare but serious emergency that can follow a minor fall or fracture in Duchenne. Warning signs, why it happens, and acting fast.
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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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Adult Life With Duchenne: Work, Living, and Relationships
People with Duchenne are living longer into adulthood. What adult life can hold beyond medical care: work, independent living, relationships, and self-direction.
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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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Joining a Clinical Trial: What It Means for a Duchenne Family
Deciding whether a child joins a Duchenne clinical trial is hard. What participation involves, the hopes and burdens, questions to ask, and how families weigh it.
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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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Social Inclusion and Belonging at School in Duchenne
Belonging matters as much as access at school. How children with Duchenne can be included socially, how to handle exclusion or bullying, and what schools can do.
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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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Skin and Pressure Care for Wheelchair Users With Duchenne
Once a child with Duchenne uses a wheelchair full time, skin and pressure care matter. Why pressure injuries happen, how to prevent them, and what to watch for.
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Staying Active and Accessible Recreation in Duchenne Muscular Dystrophy
Activity matters in Duchenne, within limits. Why gentle, guided movement and accessible recreation help, what to avoid, and how children stay involved.
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Gastrostomy and Tube Feeding Decisions in Duchenne Muscular Dystrophy
When eating becomes hard in Duchenne, a gastrostomy can protect nutrition and weight. What tube feeding is, when it is considered, and what the decision involves.
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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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Fatigue and Energy Conservation in Duchenne Muscular Dystrophy
Fatigue in Duchenne: why children tire more easily, how it affects school and daily life, and energy-conservation strategies that help them do more.
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Organizing Medical Information: A Care Binder for Duchenne Families
Organizing a child's Duchenne medical information: what to keep in a care binder, why it helps across a multidisciplinary team, and how to keep it current.
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Airway Clearance and Cough Assist in Duchenne Muscular Dystrophy
Airway clearance in Duchenne: why a weak cough raises infection risk, how assisted coughing and cough-assist machines help, and when families bring them in.
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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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Hand and Upper-Limb Function in Duchenne Muscular Dystrophy
Hand and upper-limb function in Duchenne: how arm and hand strength change over time, why it matters for independence, and how therapy and adaptations help.
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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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Losing Ambulation: What Changes When a Child With Duchenne Stops Walking
When a child with Duchenne stops walking, care shifts: why it happens, what to expect, and how scoliosis, cardiac, and respiratory monitoring intensify.
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Female Carriers and Cardiomyopathy in Duchenne Muscular Dystrophy
Female carriers of DMD: manifesting carriers, cardiac involvement, why surveillance matters even for asymptomatic mothers, and what to ask the team.
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Insurance Appeals for Duchenne Families
Insurance appeals in DMD: when denials happen, how to structure the appeal letter, what evidence helps, and how patient organizations support families.
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Preparing for Surgery in Duchenne Muscular Dystrophy
Surgery preparation in DMD: pre-operative assessments, multidisciplinary planning, family logistics, and what to bring to the hospital.
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Telemedicine and Remote Care in Duchenne Muscular Dystrophy
Telemedicine in DMD: when virtual visits work, what they cannot replace, and how families can prepare to get the most from a remote appointment.
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Working With DMD Patient Organizations
Patient organizations in DMD: PPMD, MDA, CureDuchenne, Jett Foundation, Duchenne UK. What they do, how families use them, and how to get involved.
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Managing Illness Days at Home in Duchenne Muscular Dystrophy
Managing sick days in DMD at home: fever, respiratory infections, missed corticosteroids, and when to call the clinic or head to the emergency room.
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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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Returning to School After a Duchenne Diagnosis
Returning to school after a DMD diagnosis: briefing teachers, talking to classmates, the first weeks, and what families can plan.
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Endocrine Care in Duchenne Muscular Dystrophy
Endocrine care in DMD: growth, puberty, adrenal suppression, and why patients on long-term corticosteroids need an endocrinologist on the team.
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Financial Planning and Insurance for Duchenne Families
Practical guidance on insurance, disability benefits, copay assistance, equipment funding, and long-term financial planning for DMD families.
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The DMD Care Team: Who Does What
A practical guide to the multidisciplinary DMD care team: neuromuscular, cardiac, pulmonary, rehab, endocrine, psychosocial, and how they coordinate.
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The DMD Care Team: Who Does What
A practical guide to the multidisciplinary DMD care team: neuromuscular, cardiac, pulmonary, rehab, endocrine, psychosocial, and how they coordinate.
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Speech and Language Therapy in Duchenne Muscular Dystrophy
Speech-language therapy in DMD: dysphagia assessment, voice preservation, communication strategies, and when to start working with an SLP.
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Bowel and Bladder Care in Duchenne Muscular Dystrophy
Bowel and bladder dysfunction in DMD: prevalence, why it happens, practical management, and when to escalate.
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Genetic Counseling for Duchenne Families
Genetic counseling in DMD: carrier testing for mothers and sisters, recurrence risk, family planning options, and what a counseling visit covers.
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Assistive Technology for Communication and Daily Life in DMD
Assistive technology in DMD: switches, eye-gaze, AAC, smart-home, and how to stage the toolkit as upper-extremity function changes.
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Dental Care for Duchenne Families
Dental care in DMD: routine cleaning, oral health, sedation and anesthesia precautions, and how to brief a dentist who has not treated DMD before.
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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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Travel With Duchenne: A Practical Guide for Families
Travel with DMD: airline notice for power wheelchairs, batteries, BiPAP and cough assist, medications, documents, and what to plan before the trip.
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Emergency Preparedness for Duchenne Families
Emergency preparedness in DMD: the emergency card, steroid stress dosing, anesthesia and cardiac alerts, and how to brief a hospital that does not know your child.
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Nutrition in Duchenne Muscular Dystrophy
Nutrition in DMD: weight management on steroids, bone-supporting nutrients, constipation, swallowing changes, and when to involve a dietitian.
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Home Accessibility for Duchenne Families
Practical home modifications for DMD families: doorways, bathrooms, bedrooms, ramps, lifts, and how to plan ahead without overbuilding.
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Choosing a Wheelchair in Duchenne Muscular Dystrophy
Wheelchair selection in DMD: when to consider one, manual vs power, seating, growth-ready features, and what families should ask the team.
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Reading Health Information About DMD Carefully
Health information about Duchenne can be misleading, exaggerated, or incomplete. Practical media literacy questions for families.
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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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From Parent to Advocate: A Practical Guide
Many DMD parents become advocates. This guide describes what that work involves, how to start, and how to do it sustainably.
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Crossing Borders for Duchenne Treatment
Some families relocate or travel abroad for Duchenne treatment. The decision involves access, evidence, logistics, finances, and family.
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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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The First Year After a Duchenne Diagnosis
The first year after a Duchenne diagnosis is intense, fragmented, and full of decisions. A guide to what families can expect and ask.
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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.
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DMD Standards of Care: What Good Care Includes
Dmd standards of care include coordinated neuromuscular, heart, lung, rehab, bone, nutrition, and psychosocial support.
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DMD Clinical Trial: A Family Reading Guide
Use this dmd clinical trial guide to understand phases, endpoints, eligibility, placebo, risks, and questions for a care team.