Jesse's Journey Foundation

Defeat Duchenne. Change Lives.

FAMILY SUPPORT & RESOURCES

Duchenne Muscular Dystrophy Treatment & Support

Cavalier family

Josh and Amy Cavalier, with their sons Liam and Kaleb

If someone in your family has been diagnosed with Duchenne muscular dystrophy your first instinct will likely be to seek out information on available treatments and other available support services.

There’s no question that hearing the diagnosis of DMD is difficult news and can be very overwhelming. The most important thing for you to know is that there are many resources available to you and you are not alone.

If you are an extended family member or friend with someone whose child has been diagnosed with Duchenne muscular dystrophy then it will be natural to feel like you want to do something, even if you’re not sure what that something is. Stay in contact with the family who has received the diagnosis and ask them if there is anything they need – even a supportive person to talk to can be a great comfort.

If you would like to help raise money for research in to Duchenne muscular dystrophy on behalf of a family, we have many resources available. Click here  for more information on planning your own fundraising event for Duchenne muscular dystrophy.

Treatment of Duchenne Muscular Dystrophy

Although there is currently no cure, a number of different professionals may be involved in the ongoing treatment of your child’s Duchenne muscular dystrophy. Please see below for more information.

Primary Care Physician:

Your primary source for medical care information for your child will be your primary care physician. They are the first point of contact if you suspect your child is showing the symptoms of Duchenne muscular dystrophy. Your child’s primary care physician can answer any questions related to your child’s health and can provide referrals to specialists if necessary.

Social Worker:

You may also wish to ask your doctor for a referral to see a social worker. A social worker is available to patients and families to provide supportive counselling. Families may benefit from discussing emotional, financial, family and other related concerns with a social worker as you try and understand, adjust and cope with a new diagnosis. In addition, the social worker can assist with information about community resources and/or financial programs that are available.

Paediatric Neurologist:

If you have not yet been referred to a specialist for the treatment of your child’s Duchenne muscular dystrophy then you may wish to request a referral to a paediatric neurologist. A paediatric neurologist is a physician who specializes in children with neurological, including neuromuscular, disorders. Duchenne muscular dystrophy is classified as a neuromuscular disorder.

Clinical Trials:

Find out about current clinical trials by using the search tool below.