Multi-Disciplinary Duchenne Healthcare Team | CureDuchenne

Neurologist

Commonly the head of multi-disciplinary Duchenne healthcare teams.

When to contact a Duchenne trained neurologist?

If you or your primary physician suspect Duchenne
When you need a specialist to test for Duchenne
To lead your multiple provider care
Initiate genetic testing

Endocrinologist

The endocrine system is affected by chronic glucocorticosteroid use.

When to contact a Duchenne trained endocrinologist?

When considering initiating or stopping use of steroids
To regularly assess weight and height
If weight gain has been difficult to control
If onset of puberty is delayed
To get input on bone health status and options

Cardiologist

The heart is a muscle too and can be affected at different rates for those with Duchenne. A cardiologist is essential to a good Duchenne healthcare team.

When to contact a Duchenne trained cardiologist?

To get a baseline cardiac exam at 6 years old
To follow up on cardiac measures as recommended by the care guidelines or as needed
When experiencing chest pain or palpitations
If there is more fatigue than normal and having trouble doing normal daily routine
When not sleeping well
If there is persistent weight loss or vomiting

Psychologist

Some with Duchenne experience language delay and difficulty with focus/attention. Those with Duchenne and their families often require mental health support.

When to contact a Duchenne trained psychologist?

To assess any delay in language development
When school-aged and having learning difficulty
If interaction with others, including peers is difficult
If there are unusual fears, anxiety or depression
To help the whole family with the effect of this diagnosis

Orthopedist

Joint contractures and poor bone mineral density are common in Duchenne. An orthopedic doctor specializes in bone and joint health.

When to contact a Duchenne trained orthopedist?

To get baseline spine x-rays while still ambulatory
If there is chronic use of steroids which affects bone mineral density (osteoporosis screening)
To assess if vitamin or supplement regimen is benefiting bone health
If there is a recent fall and pain or a suspected fracture
When joint contractures have progressed despite physical therapy interventions
To consult regarding orthopedic surgical options for ankles and spine

Gastroenterologist (GI)

Muscles associated with chewing and swallowing and nutritional status are affected by Duchenne at varying degrees depending on progression.

When to contact a Duchenne trained gastroenterologist?

At baseline for assessment and recommendations on nutrition
Oral intake has decreased and too few calories are being ingested
Weight is hard to maintain (either too high or too low)
Swallowing is difficult and/or aspiration in to the lungs has occurred
Constipation is difficult to manage
To treat gastroesophageal reflux disorder (GERD)

Pulmonologist

The muscles required for breathing are affected in Duchenne as well. A pulmonologist is able to assess and treat respiratory issues as they change throughout the lifespan. Many of the symptoms might overlap with a recommended cardiology appointment.

When to contact a Duchenne trained pulmonologist?

To get baseline measures by 6 years of age and to formulate a proactive approach to treatment
If there is shortness of breath
If there is difficulty clearing secretions and phlegm and coughing is unproductive
If you suspect poor respirations at night and need to do a sleep study
If sleep is interrupted multiple times during the night
There is more fatigue and more sleepy than normal
There are frequent headaches during the day
When it is difficult to pay attention and focus during the day

Health Care Team