Sept. 30 marks LGMD Day

By the age of 24, Samantha Fauser’s life was turned upside down. After giving birth to her daughter, Ace Fauser, she noticed something strange was going on. Her leg muscles were progressively getting weaker.

 “Stress can lead to the illness developing faster,” Samantha said, “so when I got pregnant, it was enough stress to make my body shut down as much as I did, so when I went to work out, I couldn’t stand on my tippy toes, which was strange.” 

After noticing the changes, she went to the doctors and got diagnosed with Limb-Girdle Muscular Dystrophy or LGMD. She said getting diagnosed with anything can be upsetting but something that could change your life forever, can be hard to face. The doctors gave her five years before she was predicted to be in a wheelchair. 

“They thought that I would be in a wheelchair around the first handful of years, maybe around five years, and it has now been 14 years.” Fauser has now almost tripled the expectancy and now walks with a walker. 

LGMD is a rare disease causing muscle weakness, and it was first diagnosed in 1996, so most people who may have had it were misdiagnosed. At the start of her journey it was a difficult path. 

“Back when I was first diagnosed with LGMD, there was a Yahoo group, and there was about 75 people among the entire world, and everyone was speaking different languages to the point in which people were more just connecting to people instead of being formal.” 

Knowing there could be a possibility she could never walk again, she and her partner at the time decided to have a wedding. 

“What sucks is that me and my husband were never planning on being married, but when we found out I was diagnosed, he asked me to marry him so I could walk down the aisle when I could really walk.” 

Her last dance she had was on her wedding day. They wanted to make sure that moment was one to remember.

Fauser is open to teaching people about LGMD, but sometimes it’s hard, especially when she doesn’t feel positive about it. She had no control of what could happen, and for most people that may be scary not knowing what’s wrong and not being able to stop what’s going on and not having a say and what’s happening with your own body. 

When she was first diagnosed she was young and still had a lot of active life. She was dancing, starting a family, building a house and starting a business. “What has been the most difficult thing for me was just getting the diagnosis because it was nothing under my control and something I had to live with and realise that my life and my future isn’t going to be the way that I planned.” Because there isn’t anything she can do to stop it, she commits herself to her doctor’s recommendations and physical therapy, which she said she is very thankful for.

LGMD 2B is a type of limb-girdle muscular dystrophy, affecting muscles in the arms, legs, fingers, toes and face. This sub type shows up more in early 20s and can get progressively worse. Some may end up in wheelchairs by their late 20s. It all depends on their body types, how stressed their bodies are and how well they take care of themselves. LGMD mm stands for miyoshi myopathy, which mainly affects the legs and can be shown in early adulthood.  This subtype also includes weakness and atrophy in the calves.

Even when she still has some doubts about it, Fauser said she looks on the positive side of things.

“But as far as anything else, it’s not necessarily an inconvenience. I more or less adapt to it and I’m not upset at the fact that I can’t dance anymore. I’m glad that at one point I could. It means more to me that my last dance was saved for my wedding night.” 

She has always tried to look and remember the good things and the happy times, and every year on Sept. 30, which is national LGMD awareness day, her family and friends show support and show how much she matters to them. Of course, she said she still has her down days where the disease seems to be a curse, but there are many days where she shares those happy memories.