How do I talk about this?

Tools to start the conversation

People with FSHD shared their experiences during our Voice of the Patient Forum.

Often, people who have received a diagnosis find it difficult to talk to others about it. This is even more the case with a rare condition that few have heard of. You may feel alone, but please know that many others have traveled a similar road. They have not merely survived, they have flourished.

You and your loved ones may have questions about how this diagnosis will affect your lives. Here are some guides that may help you process your thoughts and figure out how to navigate your new reality:

You are not alone: A guide for the newly diagnosed. Dozens of individuals of all ages speak frankly about the thoughts they have struggled with when confronting their possible future. They don’t sugarcoat their fears, but many, somewhat unexpectedly, find positive benefits from their diagnosis.
Managing FSHD: One patient’s perspective. By an FSHD Society board member who has thought deeply about strategies for successfully navigating life with FSHD.
FSHD and Social Support. Your symptoms may not be obvious to those around you. This booklet, written by a social scientist who has FSHD, helps family and friends understand what FSHD is like and recommends various ways in which they can support you.

“Outing” yourself

Sometimes the psychological and social burden of living with a rare condition can be as heavy as the weight of coping with the physical symptoms. You may not want to share your diagnosis with people close to you—family members, friends, coworkers. Carrying a secret like this can cause tremendous stress—all the more so if you need to ask for help or accommodations. Here are stories by individuals with FSHD who took that big step to share their secret—and what happened:

“Coming out” with my FSHD diagnosis. Kelly Mahon says posting a selfie and sharing her diagnosis was the scariest thing she ever did, and it changed her life.
My journey from powerless to powerful. “Three years ago, my image of what my future looked like was shattered,” recalls Dave Lukas. “Today, I leave doctor’s offices feeling confident and grateful.”

Talking to family members about their risk of FSHD

We hope you will encourage your family members to also sign up with the Society if they have not done so already. It’s critically important that we be able to communicate directly with every affected individual for future clinical trials.

However, we understand that disclosing an FSHD diagnosis to family members can be complicated. In 70 percent of patients, the condition is inherited. A person with FSHD has a 50 percent chance of passing it on to each child. Your diagnosis may mean that other family members—a parent, siblings, children, and grandchildren—may also have FSHD. How do you tell them? Each family reacts differently. In some, everyone accepts the fact and deals straightforwardly with it. In others, there are members who don’t want to discuss it at all. It’s not uncommon for family members to disagree, vehemently, about whether and how to talk about the diagnosis. In many, parents agree to not reveal the diagnosis until there is a treatment—or until a child reaches adulthood and is thinking about starting a family. To figure out what’s right for your family, we highly recommend seeking the advice of a genetic counselor.

FAQs about genetic testing. Genetic counselor Julie Cohen, who has extensive experience working with FSHD families, answers many of your questions.

Can I meet others with FSHD?

We are the FSHD Society, a sprawling community of individuals with FSHD, their families, friends, and advocates. We include researchers and medical practitioners who have dedicated themselves to understanding and treating the condition. We are all about connecting people because we are stronger working together.

You are not alone. Our chapters are here for you.

Do you need someone to talk to? We’re here for you. Contact us!

What's Being done to develop treatments?

Newcomer's toolkit

Connect locally

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

Keep this page handy. It’s your “FSHD 101” with resources at your fingertips on symptoms, genetic testing, self-care and health care.

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

Tools to start the conversation

Can I meet others with FSHD?

Sign up for Email Alerts

CONNECT WITH US