Working with medical professionals is an everyday occurrence as you raise a child with Moebius syndrome. Getting to a level where you feel comfortable advocating for your child may take some time. The resources below will help you learn about common medical terms and practices relevant to Moebius syndrome and guide you in building a medical binder for improved record keeping and advocacy.
Finding a good medical provider can take time. A good provider will not make you feel rushed, will make you feel listened to, and will make you feel comfortable asking them questions. When in doubt, ask more questions and/or seek second opinions. Check out this guide from The New York Times for more tips and ideas on how to take charge of your medical care and advocate for a child.
Getting yourself organized and learning key medical terms can help you better navigate the healthcare system.
A binder with divided sections can help you manage medical paperwork. Make sure the binder has pockets, so you can slip in items like CD-ROMs of MRI images and paper handouts.
A thorough medical binder will include:
If you’re just getting started and feeling overwhelmed, start a folder or empty binder where you can put all of the handouts and paperwork that you’re given. You can work through organizing and updating the binder as you feel more emotionally prepared and have more time.
Moebius syndrome involves a cross-functional medical team for initial evaluation and ongoing management. Below are descriptions of disciplines you may be referred to or want to seek consultations from. If seeking treatment for a child, please make sure to see a pediatric provider of the discipline.
Check out our new guide designed specifically to help medical professionals better understand and support patients with Moebius syndrome. The guide is available for download below, or if you live in the United States, you can request that a physical copy be mailed to you by emailing email@example.com.
The Moebius Syndrome Foundation now offers Medical Travel Reimbursement Program to assist U.S. families and individuals with Moebius syndrome. Traveling to medical appointments or procedures can be costly, and this program allows the reimbursement of up to $2,000 to help offset the financial burden. Thanks to our supporters, members who reside in the United States are eligible to apply and receive medical travel reimbursement up to two times. All applications must be received at least 30 days prior to the medical appointment or procedure.