Accurate diagnosis and effective care are paramount for individuals with limb-girdle muscular dystrophy (LGMD). The “Diagnostic & Care Resources” page is meticulously curated to provide insights, guidance, and resources related to the diagnostic processes and care methodologies for LGMD. Whether you’re embarking on the diagnostic journey or seeking advanced care options, this guide aims to offer clarity, support, and direction, ensuring you’re equipped with the knowledge to make informed decisions.

Diagnostic & Care Resources

Do you think you have a form of Limb-Girdle Muscular Dystrophy (LGMD)?  It is very important for you to get a genetically confirmed LGMD diagnosis.   If your doctor tells you that you have an LGMD but doesn’t genetically confirm it, your diagnosis is incomplete.  Knowing the exact form of LGMD or sub-type is important as there are health benefits for confirming an LGMD sub-type through genetic testing.  Genetic testing can be performed with either a saliva or blood sample.

Have you received confirmation of your LGMD sub-type diagnosis?  Please consider having your name entered into a diagnosis specific “LGMD Patient Registry”.

One of the challenges of living with a rare disease such as Limb Girdle Muscular Dystrophy (LGMD) is finding physicians and other health care specialists who have a good understanding of the disease process.

The National Organization of Rare Disorders (NORD) has designated 31 Rare Disease Centers of Excellence nationwide. Each center offers the high-quality specialized care needed to help diagnose and manage complex rare diseases. Collaboration between these institutions creates critical new connections and improves access to best-in-class clinical care and resources.

There are more than 30 known subypes (forms) of limb-girdle muscular dystrophy (LGMD).  In 2017, the naming system (nomenclature) of LGMD was changed.

The American Academy of Neurology (AAN) published recommendations for the care of people with limb-girdle muscular dystrophy and related disorders.

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