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. Are there specific symptoms that you are doing something to try to improve? Which symptoms?

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* 2. Have you used prescription medications to help with your symptoms? List all that you can recall.

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* 3. What else are you doing to manage any of your FSHD symptoms? List your top three interventions.

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* 4. What are the biggest downsides of your current approach? List up to three disadvantages.

Thank you for taking the time to share your thoughts with us!
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