LGMD Awareness Day Date in the current year: September 30, 2025

Muscle dystrophies are a group of rare genetic neuromuscular diseases characterized by the weakening and breakdown of skeletal muscles over time. Limb-girdle muscular dystrophy (LGMD) is an umbrella term for muscular dystrophies that primarily affect the muscles of the hip and shoulder girdles, thighs, and upper arms.

LGMD is a genetic disorder caused by a mutation in one of the many genes that encode proteins involved in muscle function. There are more than 30 genetic subtypes of LGMD. Some have a dominant inheritance pattern, while others are recessive. LGMD is one of the most common muscle dystrophies, yet it remains a rare disease. It is classified as an orphan disease, meaning it is so rare that there is little funding for research because there is no financial incentive for drug manufacturers.

Symptoms can appear at any age. They typically worsen over time, though some patients have a mild form of the condition and are able to retain near-normal muscle strength and function. Early symptoms may include gait abnormalities and difficulty running, climbing stairs, rising from a seated or squatting position, and bending at the waist. These difficulties increase the risk of falling. Weakening of the shoulder girdle can make lifting objects or raising the arms difficult.

As the disease progresses, patients may develop posture and joint issues, and they may lose the ability to walk, eventually requiring a wheelchair. Although LGMD primarily affects skeletal muscles surrounding the shoulders and hips, some individuals may develop cardiomyopathy or breathing difficulties due to weakened respiratory muscles.

Although LGMD is not typically fatal, it can severely impact quality of life as it progresses. Like most genetic diseases, there is no cure for LGMD; treatment focuses on managing symptoms and preserving mobility. Physical therapy can help maintain muscle strength and joint flexibility as much as possible under the circumstances. However, strenuous exercise is discouraged because it can cause permanent muscle damage.

Management may also include occupational therapy and orthopedic support, such as braces or wheelchairs, if needed. Some subtypes may require medications, such as corticosteroids. Monitoring of the heart and lungs is also necessary, as they can be affected. For certain rare forms of LGMD, experimental therapies, such as gene therapy, are being studied. For now, however, treatment is mainly supportive.

LGMD Awareness Day was created in 2015. It aims to raise awareness of limb-girdle muscular dystrophy among researchers, healthcare professionals, drug developers, public health organizations, and the general public. You can get involved by learning more about LGMD, sharing what you’ve learned with others, donating to an LGMD support organization, and spreading the word on social media.