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Gordon Stewarts' Case Studies

web site by ~ Lynn Sanders

During childhood Gordon contracted the normal diseases and all cuts and bruises healed normally. In his 30's he began to notice that his skin tore easily, and wounds took longer to heal. In 1963 Gordon experienced internal bleeding and revealed a ruptured splenic artery, which had destroyed the spleen. It was during this surgery that the surgeon noticed that the arteries and tissues were very fragile and difficult to work with.

In 1982 after Gordon experienced severe diarrhea and a weight loss of fifty pounds, a laparotomy revealed that the small intestine was fused together- the surgeon explained it by saying, if you took a rose bowl filled with white marbles and filled the bowl with white glue this mass is what Gordon's bowel looked like. He didn't know where to start. Recovery was long.

The skin on his legs was thin and showed extensive scarring. In his last years, all his skin was fragile.

In 1991 an ultrasound showed an abdominal aneurysm. Since his cardiologist felt that surgery was contraindicated (because of the EDS) he continued to have the size of the aneurysm monitored. He continued to work around his home, tired easily, but still led as normal a life as his health would allow and he never complained.

It was actually in 1996 that Dr. Peter Byers gave him a confirmed diagnosis of EDS type IV.

Gordon had a brother who died from a ruptured aneurysm of the aorta following surgery. Three months later another brother died from two ruptures of the aorta during by-pass surgery. A sister died from a dissecting aneurysm of the ascending aorta. Earlier in 1954 another brother died from a rupture of a dissecting aneurysm of the aorta.

In 1928 and 1929 at the ages of 14 years and 20 years his two oldest sisters each died from what was described at that time as a heart condition.

In 1967, surgery for a cholecystectomy again was long and difficult. Adhesions were very extensive and tissues and arteries were falling apart. While still in hospital he had evisceration of the bowel and was taken back to the OR. It was now that Ehlers-Danlos type IV was considered but not much was known about it then.

Over the years he had tumor-like lumps appear on his elbows, which were never sore and sometime disappeared. He had back surgery, which resulted in loss of feeling in part of the left leg and foot. He suffered severe leg cramps for years. He suffered with kidney stones.

  In 1999 Gordon's aneurysm ruptured and he died in the Emergency Department knowing what was happening and that he was about to die. He was 73 years of age and is the inspiration to his four children, three of whom are confirmed to have Vascular Ehlers­-Danlos Syndrome.