Your condition

 

What is your diagnosis, according to your doctor?

If you are unsure of the diagnosis please speak to your doctor. They will also be able to arrange a genetic test if you have not yet had one.

Which of these symptoms do you have?

Please select all that apply.

When did symptoms related to your FSHD first occur?

Please give a date for all symptoms you selected in the question “Which of these symptoms do you have?” above.

Which of the following options describes the best motor function you are currently able to achieve?

Please select the most appropriate answer.

Do you use a wheelchair?

Please select the most appropriate answer.

Do you regularly use a non‐invasive ventilation device?

Do you regularly use an invasive ventilation device?

Have you been diagnosed with retinal vascular disease that your doctors think may be related to your FSHD?

Retinal vascular disease includes problems with the retina of your eye causing e.g. loss of vision.

Do you have hearing loss?

Have you had scapular fixation?

Scapular fixation is an operation to fix your shoulder blade to your ribcage.

Has anybody else in your family been diagnosed with FSHD?

Please select all that apply.

How would you describe your ethnic origin?

Have you signed up for any other FSHD registry?