Information for Patients & Families

The Fields Center seeks to provide individuals with FSHD and their families with useful information about FSHD (FSH Dystrophy). Outlined below is a series of questions that clinicians are often asked regarding FSHD. We will strive to update this information as new data becomes available. Your feedback regarding the content of this page and suggestions about important topics you would like to see addressed, are welcome. contact the Fields Center at: FieldsCenter@urmc.rochester.ed

General Information about FSHD

    1. What is FSHD?
    2. How is FSHD inherited?
    3. What are the Symptoms of FSHD?
    4. Does FSHD affect other parts of the body?
    5. Is infantile FSHD different from other forms of FSHD?
    6. What can someone with FSHD Expect as they age?
    7. How is FSHD Diagnosed?
    8. What causes FSHD?
    9. Are there any treatments for FSHD?


Useful FSHD Information Brochures, Podcasts

  • PHYSICAL THERAPY AND FSHD: A guide to physical therapy in FSHD written by our senior physical therapist, Shree Pandya, and others was published by The FSH Society. A copy of the brochure can be downloaded here.
  • CHILDHOOD FSHD: GUIDE FOR SCHOOLS: Published by The FSH Society, this brochure covers issues facing young people with FSHD in the educational settings. A copy of the guide can be obtained here.
  • PREGNANCY IN FSHD: The following is a podcast by Drs. Emma Ciafaloni and Eva Pressman discussing the results of their study on pregnancy in women with FSHD.
  • STANDARDS OF CARE: Consensus standards of care and management of FSHD published in 2010.


Useful Links

For more information, please contact the Fields Center