September 30th is International Limb-Girdle Muscular Dystrophy (LGMD) Awareness Day. It is a day to educate and bring attention to a group of similar conditions that affect the shoulders, hips, arms and legs. It is also a day to celebrate LGMD patients, their caregivers and family members.
I have LGMD type 2B, also known as dysferlinopathy and Miyoshi myopathy (actually there’s subtle differences between them, but for all intents and purposes, they lead to roughly the same outcome.) As of this writing, there are more than 30 subtypes of LGMD identified. They actually ran out of letters in the alphabet, so they are beginning to switch over the classifications to D1..2..3.. and R…1..2..3.. (D for dominant and R for recessive).
It is not the easiest disease in the world to live with. That is probably an understatement – it is quite difficult! You only have to look at my other blog posts to see what it’s been like to live with a weakening body. Yet, despite the difficulties, I have had the chance to meet others living with the various LGMDs and it has made all the difference in navigating the ups and downs of this condition. Many members of the community are my role models, and I try to be that to others. They are what make this day so special.
There are many resources to learn more about LGMD. The best aggregate resources are:
For me, The Jain Foundation has been a life-changing organization, as they are working on my particular condition and have been a valued resource along my disease journey.
If you have any questions about what it’s like to live with LGMD, or regarding any other LGMD topics, I’m always happy to connect!