Videos

In order to find the information which is appropriate for the phase of the disease your child or yourself are in we divided the video’s in 3 chapters: Ambulatory, Early Non Ambulatory and Late Non Ambulatory. Of course there is overlap between these subgroups and some videos are useful for all affected by Duchenne Muscular Dystrophy.

The content of the video’s is in line with the updated International Care Considerations as published in the Lancet (Neurology) early 2018 and the update DMD family guide  produced by World Duchenne Organization, TREAT-NMD, PPMD and MDAUSA.

 

We arranged the videos in three categories:

Ambulatory

Early loss of ambulation

Late loss of ambulation

Or you can search for keywords

☛ Ambulatory

Ambulatory phase is considered as the phase from diagnosis till not being able to walk independent anymore. We realize some children are diagnosed before they are able to walk.

Adjusting to the diagnosis

Keywords: Diagnosis, genetic testing, mutation, carrier, dystrophin, multidisciplinairy care

Behaviour and adjustment

Keywords: Stress, behaviour, behavior, waiting, patience, adjustment, friends, social, attention, adhd, Attention Deficit Hyperactivity Disorder, ocd, Obsessive Compulsive Disorder, autism, psychologist, psychology, psychiatry, psychiatrist

Bone Health

Keywords: Bones, bone health, bone quality, falls, bone density, thin bones, osteoporosis, vitamine D, Calcium, sunshine, steroids, biphosphonates, fractures, standing, standing frame, long leg braces, KAFO’s, Dexa scan, X-rays, vertebrates

Gastro Intestinal and Urinary Tract

Keywords: Food intake, calories, weight, overweight, eating, diet, nutritionist, dietician, pain, urinate, bowel, bowel movement, stool, drink water, rinse, dentist, healthy teeth, healthy eating, multivitamines, swallowing

Learning and Intelligence

Keywords: Brain, dystrophin, intelligence, IQ, test, reading, multiplication tables, counting, mathematics, school, learning, cognitive functions, working memory, learning disability, concentration, early detection, support, teacher, teaching, school

Cardiology

Keywords: Heart, cardio, cardiac, check, cardiologist, ECG, EKG, holter monitor, heart beats, MRI, echocardiogram, ultrasound, heart size, blood pressure, cardiac medication, betablockers, carvedilol, ace-inhibitors, chest pain

Emergencies

Keywords: Emergency room, emergency card, internet, dizziness, steroids, measurement of Carbondioxide, team, FES, fat embolism Syndrom, chestpain

Growth

Keywords: Growth, Height, short stature, measure height, growth check, endocrinologist, growth hormon, steroids

Orthopedic

Keywords: Joints, contractures, splints, ankle, knee, elbow, fingers, emergency, casting, surgical fixation, scoliosis, spine, standing frame, KAFO’s, AFO’s, Fat Embolism syndrome, steroids, Long leg braces, orthotics

Physiotherapy

Keywords: PT, stretching, movement, therapy, exercise, swimming, heel cords, braces, swimming, cycling

Pulmonary

Keywords: Breathing, pulmonologist, Pulmonary Function test, PFT, lungs, breathing muscles, assisted coughing, cough assist machine, CPAP, BiPAP, ventilation, snoring, vaccination, pneumovax, influenze shot, air stacking, cough, FVC, headache, tired

Steroids

Keywords: Prednisone, Prednisolone, steroids, Deflazacort, Calcort, weight, delayed puberty, height, bone thinning, vitamine D, Calcium, Childhood vaccination, chickenpox, cataract, bone density, vomiting, stopping steroids

Surgery

Keywords: Surgery, risk, safety, anesthesia, inhaled anesthesia, local anesthesia, physiotherapist, laughing gas, nitrous oxide, anesthesiologist

☛ Early loss of ambulation

Early loss of ambulation is considered as the phase when you cannot walk anymore, but you can still use your arms and are not using a ventilator or probably just at night.

Behaviour and adjustment

Keywords: Stress, behaviour, behavior, waiting, patience, adjustment, friends, social, attention, adhd, Attention Deficit Hyperactivity Disorder, ocd, Obsessive Compulsive Disorder, autism, psychologist, psychology, psychiatry, psychiatrist

Bone Health

Keywords: Bones, bone health, bone quality, falls, bone density, thin bones, osteoporosis, vitamine D, Calcium, sunshine, steroids, biphosphonates, fractures, standing, standing frame, long leg braces, KAFO’s, Dexa scan, X-rays, vertebrates

Cardiology

Keywords: Heart, cardio, cardiac, check, cardiologist, ECG, EKG, holter monitor, heart beats, MRI, echocardiogram, ultrasound, heart size, blood pressure, cardiac medication, betablockers, carvedilol, ace-inhibitors, chest pain

Emergencies

Keywords: Emergency room, emergency card, internet, dizziness, steroids, measurement of Carbondioxide, team, FES, fat embolism Syndrom, chestpain

Gastro Intestinal and Urinary Tract

Keywords: Food intake, calories, weight, overweight, eating, diet, nutritionist, dietician, pain, urinate, bowel, bowel movement, stool, drink water, rinse, dentist, healthy teeth, healthy eating, multivitamines, swallowing

Growth

Keywords: Growth, Height, short stature, measure height, growth check, endocrinologist, growth hormon, steroids

Breathing assistance

Keywords: Breathing, ventilation, respiratory, pulmonologist, home ventilation, tired, headaches, school, difficulties think, breathing machine, shallow breathing, sleep study, mask, obstructive sleep apnea, CPAP, BiPAP, hypoventilation, snoring

Learning and Intelligence

Keywords: Brain, dystrophin, intelligence, IQ, test, reading, multiplication tables, counting, mathematics, school, learning, cognitive functions, working memory, learning disability, concentration, early detection, support, teacher, teaching, school

Orthopedic

Keywords:Joints, contractures, splints, ankle, knee, elbow, fingers, emergency, casting, surgical fixation, scoliosis, spine, standing frame, KAFO’s, AFO’s, Fat Embolism syndrome, steroids, Long leg braces, orthotics

Physiotherapy

Keywords: Moving, wheelchair, scooter, mobility, fatigue, transfers, stretching, sport, airstacking, safety

Puberty

Keywords: Growth, stage of puberty, testosterone, hormons, endocrinology, late puberty

Pulmonary

Keywords: Breathing, pulmonologist, Pulmonary Function test, PFT, lungs, breathing muscles, assisted coughing, cough assist machine, CPAP, BiPAP, ventilation, snoring, vaccination, pneumovax, influenze shot, air stacking, cough, FVC, headache, tired, mask, tube, sip and puff, tracheostomy, tracheostomy tube, windpipe

Steroids

Keywords: Prednisone, Prednisolone, steroids, Deflazacort, Calcort, weight, delayed puberty, height, bone thinning, vitamine D, calcium, cataract, bone density. arm function, hand function, breathing, vomiting, stopping steroids

Surgery

Keywords: Surgery, risk, safety, anesthesia, inhaled anesthesia, local anesthesia, physiotherapist, laughing gas, nitrous oxide, anesthesiologist

Transition

Keywords: Transition, adult care, independent, living, school, dreams, emergency plans, finances, insurance

☛ Late loss of ambulation

Late Loss of ambulation is considered the phase when you, in general, need ventilation and have very limited arm and handfunction. Everybody is different but often young adults with DMD are in this phase.

Behaviour and adjustment

Keywords: Stress, behaviour, behavior, waiting, patience, adjustment, friends, social, attention, adhd, Attention Deficit Hyperactivity Disorder, ocd, Obsessive Compulsive Disorder, autism, psychologist, psychology, psychiatry, psychiatrist

Bone Health

Keywords: Bones, bone health, bone quality, falls, bone density, thin bones, osteoporosis, vitamine D, Calcium, sunshine, steroids, biphosphonates, fractures, standing, standing frame, long leg braces, KAFO’s, Dexa scan, X-rays, vertebrates

Cardiology

Keywords: Heart, cardio, cardiac, check, cardiologist, ECG, EKG, holter monitor, heart beats, MRI, echocardiogram, ultrasound, heart size, blood pressure, cardiac medication, betablockers, carvedilol, ace-inhibitors, chest pain

Breathing assistance

Keywords: Breathing, ventilation, respiratory, pulmonologist, home ventilation, tired, headaches, school, difficulties think, breathing machine, shallow breathing, sleep study, mask, obstructive sleep apnea, CPAP, BiPAP, hypoventilation, snoring

Emergencies

Keywords: Emergency room, emergency card, internet, dizziness, steroids, measurement of Carbondioxide, team, FES, fat embolism Syndrom, chestpain

Cardiac devices

Keywords: Heart, cardio, cardiac, check, cardiologist, ECG, EKG, holter monitor, heart beats, heart rhytm, loop recorder, pacemaker, heart control, ICD, intra cardiac device, artificial heart, ventricular assist device

Gastro Intestinal and Urinary Tract

Keywords: Food intake, calories, weight, overweight, eating, diet, nutritionist, dietician, pain, urinate, bowel, bowel movement, stool, drink water, rinse, dentist, healthy teeth, healthy eating, multivitamines, swallowing

Learning and Intelligence

Keywords: Brain, dystrophin, intelligence, IQ, test, reading, multiplication tables, counting, mathematics, school, learning, cognitive functions, working memory, learning disability, concentration, early detection, support, teacher, teaching, school

Orthopedic

Keywords: Joints, contractures, splints, ankle, knee, elbow, fingers, emergency, casting, surgical fixation, scoliosis, spine, standing frame, KAFO’s, AFO’s, Fat Embolism syndrome, steroids, Long leg braces, orthotics

Physiotherapy

Keywords: Moving, wheelchair, scooter, mobility, fatigue, transfers, stretching, sport, airstacking, safety

Pulmonary

Keywords: Breathing, pulmonologist, Pulmonary Function test, PFT, lungs, breathing muscles, assisted coughing, cough assist machine, CPAP, BiPAP, ventilation, snoring, vaccination, pneumovax, influenze shot, air stacking, cough, FVC, headache, tired, mask, tube, sip and puff, tracheostomy, tracheostomy tube, windpipe

Steroids

Keywords: Prednisone, Prednisolone, steroids, Deflazacort, Calcort, weight, delayed puberty, height, bone thinning, vitamine D, calcium, cataract, bone density. arm function, hand function, breathing, vomiting, stopping steroids

Surgery

Keywords: Surgery, risk, safety, anesthesia, inhaled anesthesia, local anesthesia, physiotherapist, laughing gas, nitrous oxide, anesthesiologist

Transition

Keywords: Transition, adult care, independent, living, school, dreams, emergency plans, finances, insurance