Coordinating Your Care with FSHD

Living with facioscapulohumeral muscular dystrophy (FSHD) can feel overwhelming at times, but you don’t have to manage it alone. A strong, well-organized care team can make a big difference in your health and quality of life. Because FSHD affects different parts of the body, you may need to see several types of doctors and specialists. Working together, they can help you stay as strong and independent as possible.

Who’s on your care team?

FSHD affects everyone differently, so the care team for one person may look different from someone else’s. Here are some of the key providers you may see:

  • Neurologist – A doctor who specializes in muscle and nerve diseases. They can confirm your diagnosis, track how FSHD is progressing, and help manage symptoms.
  • Physical Therapist (PT) – Helps keep your muscles as strong and flexible as possible with personalized exercises and movement strategies.
  • Occupational Therapist (OT) – Teaches you ways to make daily activities easier, such as using adaptive tools or adjusting your home setup.
  • Respiratory Therapist – Helps monitor and support your breathing, especially if FSHD affects your lungs or makes it hard to breathe deeply.
  • Orthopedic Specialist – Can help with joint problems, scoliosis, or foot drop by recommending braces, surgery, or other treatments.
  • Speech Therapist – If FSHD affects the muscles in your face or throat, they can help with speaking, eating, and swallowing safely.
  • Genetic Counselor – Helps you understand genetic testing and what it means for you and your family.
  • Primary Care Doctor – Your main doctor who keeps an eye on your overall health and helps connect you with specialists.

How to coordinate your care

With so many specialists involved, it’s important to make sure everyone is on the same page. Here’s how you can take control of your care coordination:

  • Choose a care coordinator. This might be your neurologist, primary care doctor, or even yourself! Having one person oversee your care can help keep everything organized.
  • Keep a medical journal. Write down symptoms, treatments, and questions before appointments so you can track changes and discuss them with your doctors.
  • Bring records to appointments. If you see a new doctor, make sure they have your latest test results and notes from other specialists.
  • Communicate with your team. Let your doctors and therapists know what other specialists are recommending so they can work together on a plan that’s right for you.
  • Advocate for yourself. You know your body best! If something doesn’t feel right or you have concerns, speak up and ask questions.

A whole-body approach to FSHD care

FSHD isn’t just about muscle weakness—it can impact your breathing, movement, energy levels, and daily activities. That’s why a well-rounded approach to care is so important. By working with a team of experts and making sure they communicate with each other, you can stay healthier, stronger, and more independent for longer.

You are not alone in this journey. The FSHD Society is here to support you with resources, information, and connections to specialists who understand FSHD. If you need help finding providers or managing your care, please use the Care Connector tool or reach out to a Patient Navigator.

Care Connector
FSHD Navigator