Skip to main content

June 20, 2024: FSHD Awareness Day

WHEREAS, facioscapulohumeral muscular dystrophy, or FSHD, is a genetic neuromuscular disease that leads to the weakening of skeletal muscles; and,

WHEREAS, FSHD gets its name from the initial muscles affected in the face (facio), shoulder girdle (scapulo), and upper arms (humeral); and,

WHEREAS, individuals with FSHD, like those with other rare disorders, often experience challenges in obtaining a timely diagnosis, which takes an average of nine years for this condition; and,

WHEREAS, an estimated 1 in 8,000 individuals, or 40,000 Americans, are living with FSHD; and,

WHEREAS, FSHD symptoms can develop at any age, from infancy through adulthood, and can differ in the pattern and severity of muscle weakness; and,

WHEREAS, approximately 20 percent of individuals with FSHD  will become dependent on a wheelchair or scooter; and,

WHEREAS, although rare, patients with FSHD may become respiratory insufficient due to progressive respiratory muscle weakness, which can be fatal; and,

WHEREAS, the majority of individuals with FSHD experience chronic pain and fatigue, which may severely limit daily activities; and,

WHEREAS, the loss of upper body mobility is a debilitating symptom of the disease that can significantly impact the ability to perform daily tasks; and,

WHEREAS, there is a critical need for continued research and development of new treatments for FSHD;

NOWTHEREFORE, I, Gretchen Whitmer, governor of Michigan, do hereby proclaim June 20, 2024, as FSHD Awareness Day in Michigan.