Search for someone in your own network…sometimes rare disease isn’t as rare as you think and you never know about someone who knows someone.
Use social media
You don’t need a large group, only a handful of moms/dads that you can relate to and trust.
Find a Neurologists
start locally
ask your Duchenne mentors who they might recommend
Take note of the doctors Duchenne Organizations work with.
It’s important you feel comfortable with this person
It’s important that you are confident about the work they are doing.
Ask questions
Don’t be intimidated by doctors, part of their job is to answer your questions
After establishing your mentor group, ask them questions.
We keep an ongoing list of questions that come to our mind with an app on our phone for each doctor appt. I felt silly opening this up at our first couple appointments, but I always feel so much better when leaving knowing I didn’t forget something.
Educate yourself
Again ask questions! Ask your neuro & ask your mentors
look over Duchenne organizations websites
narrow down what you need to know by understanding your son’s mutation.
rule out all clinical trials that don’t apply to you at first using your son’s age and mutation
follow Duchenne Organizations on social media
Stay Organized
Bookmark articles you’ve read, and revisit them.
create file or binder to store paperwork to help track what was done and when.
Use a note taking app on your phone to record questions that come up
Schedule Checkin’s
Schedule a specific time (once every week/ once every month) to check in with your partner specifically about Duchenne related topics: challenges, medical bills, concerns, upcoming transitions, thoughts about a trial. Actively talk about what you’ve learned with your partner, or questions you have.
Just as you have appointments for your son’s health, don’t be afraid to seek professional help for yourself or other members of your home in the form of a counselor or therapist. Many hikers don’t hike a mountain like this without some sort of guide.
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