Survey 2 | Impact of Symptoms

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.

Question Title

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

Facial weakness

Mild scapular winging

Can’t raise arms above shoulder height

Severe scapular winging

Can’t raise arms more than 60 degrees from the side of my body

At least one muscle in my arm can lift against gravity but not against additional resistance

Foot drop

Unable to stand up from a chair unless supported on just one side

Unable to stand up from a chair unless supported on BOTH sides

I can walk unaided at all times but worry about stairs, fatigue, and falling

I can walk but use a scooter or wheelchair for distances greater than ~100 yards.

Use a scooter or wheelchair virtually all the time.

Need a breathing assist (such as Bi-Pap) at night

Need a breathing assist during the day.

Other (please specify)

Question Title

* 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?

Question Title

* 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!