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Frequently Asked Questions

I just got diagnosed with FSHD, now what?

From our personal experience, the months following the diagnosis are the hardest. You are not alone.

Reach out to us. We are here for you.

Here is a Guide for the Newly Diagnosed.

Stay positive. Stay active. Eat healthy. Please contact us and we are happy to get on the phone with you and be there to offer any support we can. 

Where can I donate to helping cure FSHD?

In Canada, the best place to donate is the FSHD Canada Foundation.

What is FSHD and where are the best places to get information?

Facioscapulohumeral Muscular Dystropy (FSHD)  is a muscle wasting disease  that affects an estimated four to 10 out of every 100,000 people. 

To learn more about the science behind the disease and getting genetic testing, visit myFSHD.

The FSHD Society  and  FSHD Canada are an excellent source of patient information including email updates and informative events. 

I don't know if I have FSHD, how can I find out?

The only way to know for sure is through genetic testing.

Ask your doctor to refer you to a neuromuscular specialist, and they can guide you through the process. Many of us locally see Dr. Christine Chapman and Dr. Hannah Breimberg. 

The discovery process can take time and be very emotional. Reach out to us if you ever need someone to talk to.

There is also a research test available internationally. Visit myFSHD and take your time to go through the site to learn more. You can order a testing kit online and it is free of charge. 

Should I exercise with FSHD?

Research has shown moderate levels of exercise with FSHD is very important.

The FSHD Society has a page with a great exercise FSHD resources to learn more. 

There is a guide available you can give to your physical therapists

In social media, there is an active community also sharing tips and advice:

What can I do to help find a cure for FSHD?

If you have FSHD please consider joining the registry to stay informed about the latest advancements as we move towards solving FSHD: Canadian Neuromuscular Disease Registry (Canada) & National FSHD Registry (USA)

FSHD clinical trials are another way to participate. There is a remote trial that people from BC can participate in.

Contact  Michaela Walker and let her know you’re interested. Read about the FSHD Move Study online or watch a video.

You can see a complete list of current FSHD trials online. 

There are currently no clinical trials in British Columbia. However, please subscribe to our email list and we can keep you informed if anything locally comes available.

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