Many of the facts listed below about LGMDs apply to these closely related diseases such as Pompe, FSHD (Facioscapulohumeral muscular dystrophy) and HIBM (Hereditary inclusion body myopathies). Patients are often mis-diagnosed or mis-classified.
- Can you stand on your toes? Not being able to stand on your toes can be an early symptom of some muscular dystrophies.
- Can you stand up from the floor without using your arms? Not being able to do this simple act can be an early symptom of muscular dystrophy.
- Everyday tasks like putting on a shirt and lifting a cup of coffee to take a drink can become nearly impossible for patients with advanced muscular dystrophies to do on their own.
- People with LGMD may think they are just clumsy or out of shape and not realize there is a reason for their muscle weakness for years before being diagnosed.
- If you have unexplained muscle weakness, you can apply for free genetic sequencing at lgmd-diagnosis.org
- LGMD Awareness Day is celebrated annually on September 30th.
- Muscular dystrophies are often confused with one another and other diseases with similar symptoms like Pompe, FSHD (Facioscapulohumeral muscular dystrophy) and HIBM (Hereditary inclusion body myopathies). Genetic testing is required to confirm the diagnosis.
- LGMD stands for “Limb Girdle Muscular Dystrophy.” The name comes from the fact that the disease causes muscle weakness primarily in the hips and shoulders.
- There are over 30 different types of LGMD, each caused by mutations in a different gene.
- Muscular dystrophies can affect anyone and symptoms may not appear until early adulthood or later.
- LGMDs are genetic diseases and are not contagious. They can run in families or an individual might be the only person in the family with the disease.
- Some people with LGMD2B/Miyoshi seem stronger during childhood than their peers but their muscle strength deteriorates later in life.
- Some LGMDs can cause muscle weakness that starts primarily in the lower part of the limbs.
- Elevated CK (creatine kinase) levels can be the first sign of LGMDs.
- There are currently no drugs to improve the symptoms of LGMD patients and steroids, like prednisone, can actually harm some LGMD patients.