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September 30 marks the first global awareness day of Limb Girdle Muscular Dystrophy. As most people know, breast cancer, leukemia and diabetes are well-recognized and researched diseases. Limb Girdle Muscular Dystrophy, on the other hand, has failed to capture the attention of researchers, even though it has been around for quite some time. The goal of the day is to help bring awareness to the disease through social media, volunteering and reaching out to news media outlets.
So What Exactly is Limb Girdle Muscular Dystrophy (LGMD)?
Limb Girdle Muscular Dystrophy, abbreviated as LGMD, affects both males and females and typically appears in teens and young adults. While it’s a form of muscular dystrophy, it can cause weakness in a person’s legs, shoulders, hips and arms. In certain circumstances, LGMD hinders a person’s breathing and heart muscles. Depending on the severity, and the age at which the disease occurs, LGMD can vary in symptoms for a patient.
What are the Symptoms of LGMD?
Early symptoms can occur in both teens and young adults and include difficulties in rising, walking, running and other types of movements. A patient with LGMD may also find it hard to climb stairs. Muscle weakness can also occur in the shoulder area, making it hard for a person to raise their arms above their head and carry heavy objects. Fortunately, the brain and other intellectual capabilities aren’t affected by Limb Girdle Muscular Dystrophy.
How Does Limb Girdle Muscular Dystrophy Progress?
Since LGMD is a progressive disease, a person who has it will experience continuous muscle weakness throughout the course of their lifetime. The rate of the severity can also vary and travel between the left, right and neighboring sides of the body. If the onset of the disease occurs early during childhood, muscle weakness, body size and weight may increase into adulthood. One or both parents can pass the faulty gene on to their child. This can be done by dominant recessive or autosomal.
Tips for Diagnosing LGMD
Improved testing methods are currently being developed to help diagnose LGMD. While it can mimic other neuromuscular symptoms, a physician may use a process of elimination to help make diagnosing the disease easier. In addition to a physical examination, the doctor will also take into account an individual’s medical and family history.
Ways to Manage Symptoms
People affected by Limb Girdle Muscular Dystrophy find that combining a healthy diet with moderate exercise can help control their weight. Water aerobics, swimming and low-resistance movements can provide greater mobility for an individual with LGMD. Assistive devices, physical and occupation therapies can also prove helpful in maintaining flexibility. While the disease may make it challenging to move, patients are encouraged to walk and stay active for as long as possible. For individuals where the disease has become more progressive, you may find it easier to use a scooter or wheelchair for longer distances and choose to walk on your own for shorter adventures. Back supports and special seating can help prevent spinal instability.
What You Can Do to Raise Awareness
The goal of Limb Girdle Muscular Dystrophy Awareness Day on September 30, 2015 is to bring attention to this rare neuro-muscular disease. Since it can affect so many lives from childhood to adults, we are hoping to use social media, news outlets and volunteers to reach a global audience.
If you want to show your support, you can become an ambassador. LGMD family members, patients, health care professionals, drug developers, researchers and any other association interested in obtaining more information about the disease can band together to become an ambassador.
Since there’s no cost involved, it’s easy to show your support.
As an ambassador, you can bring more awareness to LGMD by:
◾Posting the Limb Girdle Muscular Dystrophy Awareness Day logo on your Internet site and any publications.
◾Follow our Facebook posts by liking and sharing them with your family and friends.
◾Volunteer for an upcoming LGMD Spotlight Interview.
◾Change your profile picture on Facebook to the LGMD Awareness Day logo.
◾Interact with local news media to see if they will cover LGMD Awareness Day.
◾Contact your state and local elected representatives to get an official LGMD Awareness Day Proclamation.
◾Organize an LGMD Awareness Day fundraiser such as a run or walk on or near September 30.