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Joyce Rogers Case Studies

web site by ~ Lynn Sanders

Joyce, aged 56, was diagnosed with Vascular EDS when she was 47. With a family medical history of sudden traumatic illnesses, many resulting in death, she sought genetic counseling prior to undergoing thyroid surgery.

Dr. Peter Byers referred her to Geneticist Dr. Mark Ludman who arranged for biopsy testing.

Prior to diagnosis, Joyce was not aware of any serious symptoms of EDS but in retrospect she had jaw problems due to an overbite, suffered form chronic back pain, had leg cramps, lobe less ears and thin scalp hair.

Her son Brian, delivered by C-Section was also diagnosed with EDS. Within weeks of childbirth, she was hospitalized with severe abdominal pain and a suspected intestinal blockage. The situation rectified itself without surgery.

Her thyroid surgery was done without complication in 1996. In 2000, she had a spontaneous colon rupture and had to have a colostomy, which her surgeon agrees will not be reversed.

Since her surgery, she has developed abdominal hernias and again her surgeon advises against surgical treatment. There have also been instances of inexplicable bleeding; she was hospitalized in 1999 for nosebleeds and in 2003 for transfusions due to blood loss from an undiagnosed cause.

Joyce's  family history with EDS is extensive. Since her diagnosis, nine other relatives - parent, uncle, siblings, son, niece, and cousins have been diagnosed by Dr. Byers.

In addition, there were ten others undiagnosed and now deceased who presented with similar symptoms.