Today, September 30, is Limb-Girdle Muscular Dystrophy Awareness Day.
This day is extremely personal to me because I live with Limb-Girdle Muscular Dystrophy (LGMD) every single day.
I was diagnosed around 2010–2011, and since then, I have watched this disease change my body, my independence, my everyday routine, and honestly, the way I look at life.
LGMD causes progressive muscle weakness, particularly around areas such as the shoulders, arms, hips and legs. But when you’re actually living with LGMD, you realize it’s about so much more than muscle weakness.
This Is My Everyday Life
My LGMD has progressed to the point where I cannot stand or walk, and I use a power wheelchair.
I need assistance with many everyday things that most people don’t even have to think twice about.
Getting out of bed. Getting dressed. Showering. Repositioning. Preparing food. Reaching for something. Going somewhere. Traveling. Making sure I have caregivers available to help me.
There is so much planning involved just to live your everyday life.
But LGMD hasn’t stopped me from being Keisha.
I’m still an entrepreneur. I’m still an advocate. I’m still creative. I’m still outspoken. I’m still building businesses and ideas. I’m still advocating for accessibility, better healthcare, accessible housing, transportation, adaptive fashion and better support for the disability community.
LGMD is a huge part of my life, but it isn’t everything about me.
Sometimes I Feel Like the LGMD Community Gets Forgotten
Since today is about awareness, I also want to talk about something that has been on my mind for a long time.
Sometimes, I feel like the Limb-Girdle Muscular Dystrophy community gets forgotten.
Even within the larger muscular dystrophy community, sometimes I’m sitting there wondering:
What about us? Where is LGMD?
I especially find myself feeling this way when it comes to the Muscular Dystrophy Association.
I know MDA represents many different neuromuscular diseases, including LGMD, and I’m not saying that they don’t do anything for our community.
But speaking from my own personal experience and feelings as someone actually living with LGMD, sometimes I don’t feel like our community gets the same visibility or attention.
And I’m honestly not sure why.
This isn’t about taking attention away from another muscular dystrophy community. Every person living with a neuromuscular disease deserves research, resources, treatment, representation and support.
I just want LGMD to be included in that conversation too.
I want to see more people living with LGMD featured.
More of our stories.
More education about the different types of LGMD.
More conversations about what progression actually looks like.
More research.
More resources.
More attention to adults living with LGMD.
More opportunities for people like us to have our voices heard.
Because we’re here too.
Thank Goodness for the LGMD Community
That’s also why I’m so thankful for the LGMD-specific communities and support groups that continue to exist.
Please continue them.
Seriously.
There is something incredibly comforting about connecting with another person who has LGMD and realizing, “Okay, you actually get it.”
You don’t have to explain every little thing.
We can talk about losing strength. We can talk about wheelchairs. We can talk about transfers, caregivers, accessibility, fatigue, doctors, medical equipment, insurance and all of the ridiculous things we sometimes have to fight for just to live our lives.
We can also talk about something that isn’t discussed enough, the emotional side of watching your body change as LGMD progresses.
Sometimes you just need another person who understands.
Those communities remind me that although LGMD is rare, I’m not alone.
Awareness Can’t Stop After September 30
I’m happy that we have today.
I’m happy to see people posting, sharing information and bringing attention to Limb-Girdle Muscular Dystrophy.
But I don’t want people to remember us only on September 30.
I want awareness to lead to something.
I want doctors to recognize LGMD sooner.
I want research to continue for the different LGMD subtypes.
I want organizations representing people with muscular dystrophy to consistently include LGMD voices.
I want newly diagnosed people to know that there is an entire community waiting to welcome them.
And I want people living with LGMD to know that their story matters, whether they’re walking independently, using mobility aids, using a wheelchair, relying on caregivers or somewhere completely different in their progression.
To My LGMD Community: I See You
Today, I’m celebrating us.
The people adapting every single day.
The people trying to maintain their independence.
The people fighting insurance companies.
The people waiting on medical equipment.
The people participating in research.
The people navigating caregiving.
The people who were just diagnosed and don’t know what their future is going to look like.
The people who have been living with LGMD for decades.
The families, friends and caregivers supporting us.
And especially the advocates who continue making noise so our community doesn’t disappear into the background.
Living with Limb-Girdle Muscular Dystrophy isn’t easy.
There are days when I’m frustrated.
There are days when I’m exhausted.
And there are definitely days when I’m completely over everything that comes along with having a progressive disability.
But then I look at everything I’ve been able to accomplish while living with LGMD.
I’m still here.
Still creating!!!!!
Still advocating!!!!!
Still building.
Still speaking up!!!!!
And definitely still making noise.
So today, September 30, on Limb-Girdle Muscular Dystrophy Awareness Day, I hope you’ll take a few minutes to learn about LGMD.
Share a post.
Share someone’s story.
Support an LGMD organization.
Reach out to somebody living with LGMD.
And most importantly, listen to us.
Because our community may be rare.
But we should never be invisible.
Happy Limb-Girdle Muscular Dystrophy Awareness Day to my LGMD family. 💚
We see each other. We support each other. And we’re going to keep making sure the rest of the world sees us too.
— Keisha Greaves