Directions

This survey is to be answered by or about a single individual who has been diagnosed or told they have FSH muscular dystrophy. (A parent, guardian, or caregiver can respond on behalf of an affected individual. Please answer the questions as if you are the patient.) Your responses are confidential. Responses are tied to a specific IP address. If you have other family members who also have FSHD, please feel free to forward them the email with the link to this survey.

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* 1. How severely are you affected? Check all that apply.

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* 2. Of all the symptoms you have experienced because of FSHD, what are the top three symptoms that you consider to have the most significant impact on your daily life?

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* 3. Are there specific activities that are important to you but that you cannot do at all or as fully as you would like because of your condition? List the three most important activities that have been impacted.

Thank you for taking our survey!
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