LGMD, MD, MS, MND…huh??
Clearing up Acronym Confusion
If you have had the time to run over my previous musings you will know that I have a condition called Limb-Girdle Muscular Dystrophy. LGMD is the preferred acronym for those of us (ok most of us) that enjoy brevity in our writing (unlike what is shown in this sentence) and do not enjoy the challenge of verbalising each sound as we plonk away at the keyboard attempting to spell really long and complicated medical words correctly; and/or really don't quite understand what each word means as it's such a new concept and therefore hard to recall the full name.
When I talk to people about my condition the most common questions that I receive are related to confusion between other neuromuscular or neurodegenerative disorders that symptomatically seem to present comparably, their acronym is very similar and the conditions are, generally, more familiar to more people. MD is most commonly mistaken for Multiple Sclerosis (MS) and Motor Neurone Disease (MND).
I clearly recall in 2007 that after my General Practitioner (GP) suggested the possibility of Muscular Dystrophy (MD) having a vague idea that it was related to muscle weakness purely based on the name and not through any real experience or understanding.
I would like to clarify the definitions and try to dispel some of the confusion. Because being more easily understood by others is not just a sense of comfort to me and others but assists in minimising ableism and disrespect, and increasing compassionate attitudes. Please note that I have no medical background besides band-aiding cut knees, wiping runny noses and hiding heartworm tablets in cheese (that's for the dog) but I have tried to research accurately to cover the basics of each condition I hope.
Muscular Dystrophy - MD
This is an overarching name given to a collective of diseases or conditions including Muscular Dystrophies such as Duchenne (DMD), Limb-Girdle (LGMD), Facioscapulohumeral (FSHD); also Spinal Muscular Atrophies, and Idiopathic Inflammatory Myopathies. They each have a complex cause related to various mutated genes, resulting in muscles that are either not evident from birth, become progressively weaker or don’t work. The upshot is that MD results in severely impaired development of muscles or muscle wasting and deterioration. Some forms of MD such as Duchenne’s and Ullrich's Congenital MD are present from birth, others such as LGMD and facioscapulohumeral (FSHD) appear later in life, sometimes in childhood and other times in adulthood such as my Adult Onset LGMD.
MD can affect all muscles depending on the subtype including distal, heart, digestive and respiratory muscles. Some of these conditions are terminal, some are not but most seem to impact one’s life severely. An estimated 41,408 Australians currently live with MD.
LGMD is the umbrella term for over 30 muscle wasting disorders affecting the arms, legs hips and butt muscles and in a small percentage of cases also the respiratory muscles.
LGMD is very rare affecting approximately 1 in 14,500 to 1 in 123,000 with men and women equally being afflicted
Motor Neurone Disease - MND
MND covers a few variants. In this group of diseases the motor neurones that send signals from your brain and spine to your voluntary muscles that enable movements such as walking, swallowing, talking and breathing gradually die. This results in muscle weakening, rigidity and atrophy and is life-shortening. There are many types of MND , which is commonly called Amyotrophic Lateral Sclerosis (ALS), in the USA named after the most common subtype of MND.
Many Aussies will know of the recent story of high profile former Australian Rules Football League (AFL) player and coach Neil Daniher. He is using his diagnosis to raise the public’s understanding of the disease. Many others are fighting, and have literally died while fighting to have the right to end of life choices legislated in Australia after being affected by MND. Around 2,100 Australians are living with MND. Diagnosis is typically made between the ages of 50-60 with the lifetime risk increasing with age.
Multiple Sclerosis - MS
This condition involves damage to the nervous system where types of scarring occur that inhibit nerve impulses from the brain, spinal cord and optic nerves from reaching the muscles. The type and severity of symptoms are different for everyone affected, with some symptoms including, but not limited to muscle spasms, limited control of limbs, fatigue, heat sensitivity and vertigo. Roughly 3 times as many women are diagnosed with MS as men, with the age of diagnosis generally between 20-40 years old. There is no cure as yet but there is medication to assist with the rapidity and control of some symptoms. Approximately .1% (25,600) of Australia’s population is currently affected by MS.
This basic explanation in no way reflective of the various paths that each individual will take in their neurodegenerative disease journey including any comorbidities but I hope that helps a little bit to understand the differences between some of the muscle-affecting neurological disorders that you have heard of.
If you wish to know more I have provided links below.
