The story of Jane
Was diagnosed with Degos in 1996. I had a heart attack due to this disease in 2000. Took down my right artery. Looks like butterfly netting according to my cariologist. This disease causes the red blood cells to coaguate along lining of arteries and veins and eats though them. Can cause bleeding in small intestine, heart attack, brain stem attack causing severe headaches and strokes. There are less than 100 of us in the world. If you would like to read othes stories, go the degosdisease.com Sometimes there are meetings held in different areas to compare and see what progress has been made in finding how this disease came about and any steps towards how to manage it or cure it. Doctors have different ways of treating this. I am basically a “homemade” hemophiliac, taking 1950 mg of aspirin and 75mg of Plavix daily so that clotting is not happening. If I need planned surgery, I cringed as I have to be off all of that for 7 days!