Preparing for your life with Duchenne
After your child has been diagnosed with Duchenne muscular dystrophy, it’s understandable that you may experience a range of different emotions. The truth is, Duchenne is a frightening diagnosis. But it doesn’t mean you or your family should lose hope.
Early medical intervention is important to help your child maintain muscle strength for as long as possible.1,2 Studies show that the lifespan of patients affected by Duchenne has improved each decade since the 1960s due to a more comprehensive treatment approach than used in the past.3
Accommodating your child's changing needs
Duchenne causes the weakening of muscles and eventually may restrict your child’s ability to walk. Although it is difficult to see your child rely on braces, scooter, or a wheelchair to move around, many children willingly use such devices as they help your child maintain some of his independence.4
As your child’s mobility changes, accommodations around your home may need to be made. For example, as your child transitions to a wheelchair, check to make sure doorways are wide enough and consider installing a ramp. Being prepared for the upcoming life changes will help you and your family stay one step ahead of this disease.
arm yourself with knowledge about duchenne
Knowledge is power and by getting as much of it as possible you will be more prepared to navigate this disease. Remember that there are other people in your child’s life who will benefit from knowledge as well. Communicating with your child’s siblings, teachers, and friends about what Duchenne is will help them better understand and accommodate your child.
It takes a village
We know that there is more to treatment than just taking care of symptoms. You and your family also have your own individual interests and support needs. Seek out the community of families like yours—of children, mothers, fathers, brothers, and sisters of Duchenne. There are many Duchenne advocacy groups that are dedicated to supporting families like yours.
1. Bushby K, Finkel R, Birnkrant DJ, et al. Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and pharmacological and psychosocial management. Lancet Neurol. 2010;9(1):77-93. 2. Vignos PJ, Jr., Spencer GE, Jr., Archibald KC. Management of progressive muscular dystrophy in childhood. JAMA. 1963;184:89-96. 3. Passamano L, Taglia A, Palladino A, et al. Improvement of survival in Duchenne Muscular Dystrophy: retrospective analysis of 835 patients. Acta Myol. 2012;31(2):121-125. 4. Progression. Parent Project Muscular Dystrophy website. https://www.parentprojectmd.org/about-duchenne/what-is-duchenne/progression. Accessed May 3, 2018.