Information for Patients and Families

We Are Here to Help!

FSH Society volunteers are available to answer your questions and help you get through this difficult time. Our goal is to respond within 24 hours.

Whether you have a new diagnosis of facioscapulohumeral muscular dystrophy (FSHD) or have been living with FSHD, we understand that you may experience a range of reactions, including anger, sadness, and fear of the future and feeling isolated with the disease. Or, you may be the parent of a child with FSHD or Infantile FSHD and wish to speak with another parent. Whatever your feelings, they are normal and you are not alone.

Life with FSHD poses challenges for every member of the family. Whether you are affected with FSHD, the parent of an affected child, or loved one of a person affected, it takes time to adapt to the day-to-day demands of the disease.

Until there are treatments and a cure, and as we continue to work diligently for therapies, our Peer-to-Peer Team is ready to talk! We are ready to listen and eager to share our own experiences with you. Please understand, however, that we are not healthcare professionals and are unable to provide medical advice, for which you should consult your doctor or other healthcare professionals.

Please call the FSH Society at (617) 658-7878 to be connected with a member of our Peer-to-Peer Team. A new friend will call you shortly.

Be prepared to answer these questions when you call the Society:

Who has been diagnosed? When? By whom? Confirmed by Genetic Testing? Confirmed by Clinical Diagnosis? You suspect you or someone close to you may have FSHD? Date of birth? Male or female? When did symptoms first appear?

Also be ready to provide a mailing address, e-mail address, and phone number.

Please call. We look forward to hearing from you.