Connective Issues Winter 2018


A GRANDMOTHER’S STORY Nearly 70 years after her diagnosis, research provides hope for her grandchildren

for children with low vision, both in Ithaca and in San Diego, where the family later moved. She continued to have eye prob- lems and eventually had to have one eye removed. As Barbara got older, she benefited greatly from medical advances as they happened—from imaging techniques, like CT scans, to aortic surgery, which she had in 2008. Barbara married and had a son, who inherited Marfan syndrome from her. His two children, Joshua, 16, and Helen, 10, have Marfan syndrome as well. Because the children were diagnosed early, they can take advantage of research advances from a young age. “Scientific progress can give us a chance to live a long life,” said Barbara, who is now 74 and lives in Fort Myers. FL. “Still, it is critical to be diagnosed and get appropriate medical treatment. Otherwise, you might as well be living in the 1940s.”


A Marfan syndrome diagnosis is often elusive, even in 2018 with improved diagnostic tools and more awareness than ever before. Consider then the fortune of Barbara Miller, who was diagnosed in 1948. Barbara was born in Alabama in 1943 and, shortly after, moved to Ithaca, NY, with her family and began her schooling there. As early as first grade, the teachers recognized that she was smart, but she wasn’t performing as expected. As one of two black children in the class, Barbara’s seat was in the back of the classroom. Her teacher realized that Barbara couldn’t see the blackboard and moved her to the front. The school also gave her mother the name of an optometrist for a vision screening. The optometrist found that she had a dislocated lens; then her family doctor determined she had arthritis, a heart murmur, and Marfan syndrome. This was before echocardiograms, before bypass surgery, before beta-blockers. Before many of the medical advances that currently help people live with Marfan syndrome. Still, Barbara thrived over the years in classes and schools

MY HOPE by Barbara Miller I hope that my grandchildren live long lives. I hope that my grandchildren thrive physically and emotionally.

I hope that my grandchildren suffer past the teasing and bullying. I hope that my grandchildren find the love of their lives. I hope that my grandchildren do not have lives of physical and mental pain. I hope that my grandchildren have support for their physical and emotional lives. I hope that my grandchildren know their faith-based support.

Your contribution to research and progress on Marfan syndrome and related disorders is appreciated. You can donate online at


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