My “quick tips” for navigating Duchenne:
Find Mentors
- 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.
