Many Mississippians have probably never heard of Limb Girdle Muscular Dystrophy or dealt with the hardships it can cause for those it afflicts. The rare form of muscular dystrophy, though more common in Europe, affects less than 200,000 people in the United States and is hard to diagnose, even by doctors.
However, one Newton County woman is working to change that.
Speaking with a class of Newton County High School juniors at the Newton County Career and Technical Center Thursday, Jenny Tadlock talked about her experiences living with LGMD, what the disease is and how she is bringing awareness to it.
“I was born in 1979,” she began. “Back then, there wasn’t this genetic testing. You just had a baby and it was what it was.”
As an infant, Tadlock said, walking around wasn’t an issue. However, her parents noticed she would only walk after they picked her up and placed her on her feet. Her pediatrician assured her parents she was healthy and would grow out of it. However, the inability to get up was one of the first symptoms.
LGMD effects the Limb and Girdle, Tadlock explained. People with the disease often have an awkward gait, struggle to get up from a seated position and have a hard time climbing stairs.
“It’s a muscle wasting disease,” she said. “It is progressive, meaning over time it’s going to get worse.”
After relocating to Russellville, Arkansas, Tadlock said her new pediatrician showed much more concern than the previous doctor.
“I had my first biopsy at 3-years-old,” she said. “I was diagnosed with muscular dystrophy. No specific type, just muscular dystrophy.”
Despite the diagnosis, Tadlock said she never felt anything other than normal. She participated in gym class, played softball and even tried out for the cheerleading squad in junior high.
“I never felt less than,” she said.
After high school, Tadlock attended East Central Community College and then Mississippi State University, where she finally agreed to get a handicap parking sticker after collecting $600 in fines for parking in the wrong zone.
“I told them I’d put a plug in for MSU ‘cause they are so super accommodating,” she said. “They moved classes to buildings with elevators because stairs were difficult for me. If you have a disability, Mississippi State will accommodate you.”
Throughout high school and college, Tadlock said, there was never a time where she felt out of place or struggled to feel normal. She said part of that is due to the close group of friends who helped her carry her bags, climb stairs and made her feel supported.
However, the birth of her first child in 2004 brought the ugly side of LGMD to bear.
“Once he got to about 10 pounds, I couldn’t pick him up,” she said. “I had just realized my legs were weak. I never thought about my arms. It just brakes my heart to hear my kid cry and I couldn’t pick him up.”
Watching others hold and comfort her child, while unable to do so herself, was devastating, Tadlock said. Shortly after, her neurologist finally discovered what type of muscular dystrophy she had, but it did little to make things better.
“I was angry at God,” she said.
However, as her son grew, the anger she felt subsided and life returned to a sense of normal for a few years until the birth of her second child.
“It was all going well until he got too big, and I was angry with God again,” she said.
Then, one day, while in the kitchen, Tadlock overheard a discussion on K-Love about Isaiah 40:31.
“but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint,” she recited. “I’d been a Christian since 1993. I’d gone to church, been baptized, but that is when my real relationship with God began.”
In August, Tadlock was browsing a Facebook page dedicated to Limb Girdle Muscular Dystrophy, when she noticed a map of the states that have days dedicated to LGMD awareness.
“Our state really didn’t have a day for it to be recognized,” she said.
After messaging back and forth with others in the Facebook group, Tadlock wrote a letter to Mississippi Governor Phil Bryant asking him to declare a Limb Girdle Muscular Dystrophy Day.
A few weeks later, Tadlock said, she received a copy of the proclamation Bryant had signed.
“On September 30, every year, it will be Limb Girdle Muscular Dystrophy Day,” she said, adding she invites everyone to participate in raising awareness and educating the public about the rare disease.
Currently, Tadlock said, there is no treatment or cure for LGMD. While her disease has progressed to confine her to a scooter, she said she still has plenty of good friends and a loving family. And, like she tells her children, Tadlock said, “There are no scooters in heaven.”
