Talking to your doctor about EXONDYS 51 (eteplirsen).
Understanding the treatment possibilities for your child’s Duchenne involves talking with their doctor about genetic testing and what the test results mean. You’ll also want to discuss your child’s mutation and whether it is amenable to exon-skipping therapy.
Use our step-by-step tool to create a personalized Doctor Discussion Guide with the suggested questions to ask at your child’s next appointment.
- Learn about tests required to diagnose Duchenne muscular dystrophy.
- Understand genetic test results and your child’s mutation.
- Find out the importance of when your genetic test was performed.
- Get a guide that’s customized for you.
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Talk with your child’s doctor about CK testing.
If you suspect that your child has Duchenne muscular dystrophy, ask your child's doctor about taking a creatine kinase (CK) test. Be prepared to discuss your child’s development and any symptoms you’ve observed. If your child’s doctor suspects a muscle disease, they may recommend the CK test—a simple, inexpensive blood test that measures the amount of creatine kinase in the blood. Elevated CK levels may indicate muscle damage.
If your child’s test results show elevated CK levels, find out if the next appropriate step is genetic testing to confirm a Duchenne diagnosis and identify your child’s mutation. Decode Duchenne offers free genetic testing to the Duchenne community and can provide genetic counselors to interpret test results.
Visit Decode Duchenne to learn more.
Visit Decode Duchenne at www.parentprojectmd.org to learn more.