Posted September 30, 2020.

HUNTINGTON – Following the state’s lead in declaring September 30 as Limb Girdle Muscular Dystrophy Awareness Day, Huntington Mayor Richard Strick signed a proclamation Wednesday morning raising local awareness of the rare neuromuscular disease. 

Limb Girdle Muscular Dystrophy (LGMD) is a group of disorders with more than 30 subtypes. It is a progressive, hereditary and debilitating condition that causes severe muscle loss, most often in the areas around the hips and shoulders.  

Many of those who suffer from it over time lose the ability to walk or perform normal activities of daily life, such as bathing, dressing, grooming and preparing meals. In some of its genetic forms, LGMD also affects the heart and muscles necessary for breathing. 

There is no known cure or treatment for LGMD. 

Each year, researchers make important advances in understanding its genetic causes and moving closer to a treatment, according to the LGMD Awareness Foundation. Funding, however, remains significantly lacking, and individuals and families affected by the disease experience difficulty finding care and related services. 

One such struggle is that individuals diagnosed with LGMD often must rely on others to help with day-to-day activities. 

“I cannot walk very long distances due to LGMD. I cannot climb stairs. Every day is a new day, and I never know how I will feel,” said Jillena Millington, a Huntington resident who has been diagnosed with an LGMD subtype. “I have leg pain almost constantly. I cannot get up out of a low chair without the assistance of someone lifting me up, so I have lost a lot of my independence.” 

Millington attended an LGMD conference last year in Chicago that drew people from all over the world. She learned there that too many people like her are denied the home health care and other services they need. 

For example, Millington said aquatic therapy could be of great benefit to her. However, she was told Medicaid would not cover its cost in her case.

Transportation poses another widespread challenge for those with LGMD. Millington estimates a handicap-accessible van needed for a person with LGMD to get to work or enjoy time outside their home can cost $50,000 to $70,000. The prohibitive cost forces them to rely on patchwork public transportation systems that do not always meet their needs. 

Seeing that so many people like her could not access the care and services they need made Millington decide to speak up and help educate others. 

“Maybe if they knew more … they would understand why we need the home health aide,” she said. 

LGMD is known to occur in men and women among all ethnicities. Its age of onset and severity can vary widely from one case to the next. Genetic testing is required to confirm a diagnosis. 

Early symptoms of LGMD can include: 

• Difficulty climbing stairs.
• Frequent falls
• Difficulty rising from a seated position

The LGMD Awareness Foundation’s goal is to connect and unite families with those working to develop treatments. For more information or to make a donation, visit lgmd-info.org or mda.org.