Shannon Lord never dreamed she’d be lecturing first-year medical school students.
But for the past several years Lord told her story each fall to incoming students at Emory University. It started out as a 10-minute segment, but last fall she took the entire class period, said Dr. Linton C. Hopkins, a neurologist at Emory.
“We called it ‘the Shannon Show,’ ” the doctor said.
Hopkins said Lord was able to help incoming medical students understand the frustration a mother goes through by describing how she made countless doctor's visits in search of a diagnosis for her then-teenage sons, Hunter and Ashby, and be told there was nothing wrong with them. The young men, now in their 30s, were eventually diagnosed with myotonic dystrophy, a type of muscular dystrophy.
“It hit me that I couldn’t do any better than to get a mother who’d gone through what Shannon had gone through to speak to these students,” he said.
As part of her story, Lord told students of her painful realization that the disease that affected both of her sons was the result of a genetic trait they inherited from her, said Larry Lord, her husband of more than 41 years.
“Once she got out of her funk over that,” he said, “she started trying to figure out how she could help not just our kids, but anybody touched by myotonic dystrophy.”
The founding chairwoman of the Myotonic Dystrophy Foundation, Shannon Lord spent more than 20 years advocating for more research and heightened awareness of the disease.
“She was able to change the way we think about and research myotonic dystrophy,” Hopkins said.
Shannon Miller Lord, of Atlanta, died Tuesday from complications of cancer. She was 66. A memorial service is planned for 10 a.m. Monday at St. Luke’s Episcopal Church, Atlanta. Her ashes will be interred after the service. H.M. Patterson & Son, Arlington Chapel, is in charge of arrangements.
A native of Norfolk, Va., Lord grew up the daughter of a naval captain and also lived in Alabama, Florida and Hawaii during her childhood. She graduated from high school in Mobile, Ala., and after college she moved to Atlanta, where she was an English teacher at Wheeler High School. She later worked as an assistant curator at the Tullie Smith House at the Atlanta History Center.
A 1968 graduate of the University of South Alabama, the English major knew there had to be a way she could help doctors and researchers understand what was happening to her sons. She used the communication skills she learned while in college to help get her message across, her husband said.
“For her it was all about communication,” he said. “It didn’t matter who she was talking to and she could talk to any and everybody.”
Hopkins echoed that sentiment, saying she could capture the attention of researchers, physicians and parents of other children affected by myotonic dystrophy.
“She could speak the science and talk to the patients,” he said. “And she could do it with such a soft manner.”
In addition to her husband and sons, Lord is survived by her brothers Harold Crenshaw “Pokey” Miller Jr. of Daphne, Ala., David Miller of Mobile, Ala. and William Ross “Bebo” Miller of Robbinsville, N.C.; and sister Katie Miller Farnell of Fairhope, Ala.
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