Written by: Bliss Welch
September is Muscular Dystrophy Awareness Month. A time to raise awareness for individuals living with muscular dystrophy and other neuromuscular diseases. As a teenager, I was diagnosed with Limb Girdle Muscular Dystrophy 2B/R2. September 30th will mark the eleventh annual Global LGMD Awareness Day. The entire month is a collaborative opportunity to share our stories and lived experiences in an effort to raise awareness for individuals living with LGMD.
What is Limb Girdle Muscular Dystrophy (LGMD)?
Limb Girdle Muscular Dystrophy (LGMD) is a term for a group of rare conditions that cause weakness and wasting of the muscles in the arms and legs. In some LGMDs, the muscles most affected are those closest to the body, the proximal muscles, specifically the muscles of the shoulders, upper arms, pelvic area, and thighs. In other LGMDs, the weakness progresses first to the muscles away from the body’s core, the distal muscles, like the lower legs, foot, forearm, and hands. But eventually the weakness will affect almost all muscles in the body.
Why is it important to raise awareness for LGMD?
Limb Girdle Muscular Dystrophy is considered an orphan disease because it affects a small percentage of the population. This means LGMD does not receive the attention of researchers, health care providers, or the general public that it deserves. It is such a rare disease that many patients living with LGMD have limited knowledge of their diagnosis and the progressive disease process.
What to expect long-term with Limb Girdle Muscular Dystrophy?
Well, this question doesn’t have a “one size fits all” answer. There are over 30 different subtypes of LGMD. The symptoms, age of onset, and disease progression of each subtype can vary significantly. Some subtypes can cause heart and respiratory complications. But all subtypes will include progressive muscle weakness. This weakness will eventually lead to loss of independence and mobility.
How to live a full life with LGMD?
An LGMD diagnosis does not keep you from living a full life, but it does require you to adapt to changes in strength. It is essential to have a strong support system that includes family, friends, and medical professionals. There are tools, technology, and equipment to aid in maintaining your independence as your muscles weaken. My Quantum Stretto wheelchair has been the best thing for my independence because it is quite literally my legs. I can navigate life on my terms thanks to my Stretto power wheelchair. Life at iLevel makes life with LGMD so much better!
Help me celebrate LGMD Awareness Day on September 30th by sharing this post and wearing LGMD’s signature color LIME GREEN!
