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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
3rd Annual Patient Day Presentations on Saturday, September 18, 2010
For people unable to attend this year, we are pleased to post links to this year’s presentations on our website for review. To access these materials, click here. The Fields Center Directors offer special words of thanks to our presenters for sharing their expertise! We hope that you will find these slides informative and that you will consider joining us next year to hear these talks in person. Until then, we encourage you to check our website regularly for updates and for information on next year’s meeting! Hope to see you there!
2nd Annual Patient Day Presentations from Friday, September 25, 2009
Unfortunately, some of our friends were unable to attend this year. Before the conference, some of our invited guests expressed regret that they were unable to attend this year’s meeting, yet they wanted to hear from our experts. While there is no substitute for hearing the information first-hand, we are pleased to be able to post the slide presentations from this Patient Day on the Fields Center website. You will find these materials, by clicking here. The Fields Center Directors offer special words of thanks to our presenters for sharing their expertise!
General Information on FSHD
- What is FSHD?
- How is FSHD inherited?
- What are the Symptoms of FSHD?
- Does FSHD affect other parts of the body?
- Is infantile FSHD different from other forms of FSHD?
- What can someone with FSHD Expect as they age?
- How is FSHD Diagnosed?
- What causes FSHD?
- Are there any treatments for FSHD?
Useful FSHD Information Brochures
- Physical Therapy Guide for 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.
- 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.
- Muscular Dystrophy Association
- The FSH Society
- Pacific Northwest Friends of FSH Research
- The Chris Carrino Foundation for FSHD
For more information, please contact the Fields Center FieldsCenter@urmc.rochester.edu