Newcomer's Toolkit | FSHD Society

Welcome!

While no one wishes for a diagnosis of FSHD, now that you are here, you are about to join an awesome community. We are re-writing the future by taking charge of research to improve medical management and find treatments and a cure. We are living full lives, contributing in extraordinary ways to society.

Check out FSHD University, our resource with articles and videos about medical care, fitness and exercise, research, and mental health. Another invaluable resource is our blog. It is full of articles to help you stay up to date on the latest research; provide helpful information on living with FSHD; keep you informed on local, regional and national events; and let you know more about how you can be involved.

If you would like to receive all of our news including e-alerts about clinical studies and trials, please join our Contact Registry.

If you just want news but not clinical trial alerts, simply sign up here.

The Basics

FSH muscular dystrophy is rare, affecting around 1 in 8,000 people, so your doctor and other healthcare providers are unlikely to know much about it. You will need to take charge by educating yourself and finding healthcare providers who are open to learning from you and from experts that we can refer them to.

Knowledge is power

Although it may be daunting to contemplate your future with FSHD, you are better off if you are well-informed.

FSHD does not define you. It’s not a catastrophe. It’s a condition to be managed.
Time is on your side. Usually, symptoms progress slowly, giving you time to adapt to changes in physical ability.
FSHD varies greatly from one person to the next. You may never develop some symptoms, but it’s best to know what to look out for.
Be proactive. When you experience weakness, fatigue, or pain, it is tempting to “power through,” but this can increase the risk of injury. Address the problem early on with good medical guidance, so that you can avoid more serious problems.
Mental health is important. It’s normal to feel anxious or depressed. You will adjust, but if symptoms get worse, you can experience a setback. Find people who understand and can help you cope.

Healthcare Toolkit

Here is our basic Healthcare Toolkit. Keep the information handy, and share it with your family and healthcare providers

Symptoms. Most people have some, but not all, of the signs of FSHD. There are some symptoms you may not realize are associated with this condition.
About FSHD. Our mini “bible” co-written with leading experts. Also available in Spanish and Chinese.
Physical Therapy for FSHD. A guide for you and your physical therapist to help you develop therapies that work for you. Also available in Chinese.
Genetic testing for FSHD. Information about testing technologies, guidance from genetic counselors, and letters to request insurance coverage for testing.
Evidence-based FSHD Care Guideline Summary from the American Academy of Neurology. Helpful to share with your doctor.
Medical Issues. Describes the range of medical issues that can come up for people with FSHD and the medical specialists involved in managing them.
Mindfulness with Dr. Jennifer Egert. From FSHD Radio, Dr. Egert, who has FSHD in her family, discusses techniques to cope with anxiety and stress.

If you are able to make an appointment at one of the FSHD Clinical Trial Research Network (CTRN) sites, we highly recommend it. Many people make a point of having their annual check-up at a CTRN clinic. You will be seen by a team that has expertise with FSHD, and these clinics are also involved with research and drug trials. It is empowering to meet the researchers who have dedicated themselves to finding treatments for FSHD and to know that you can be part of the solution.

Questions? Contact us!

How do I Talk about this?

What's being done to develop treatments

Connect Locally

We provide guidance on how to talk about your diagnosis with your healthcare providers, your family, friends, coworkers, and the world at large.

A lot, as it turns out. Visit this page to learn about research on treatments and your essential role in moving things forward faster.

There’s comfort and power in numbers. Individuals and families in your local area can be an invaluable resource. We’ll connect you.