The disease is different for everybody. Mine has resulted in two brain surgeries, spinal surgery, two partial nephrectomies, and an eye laser treatment. Everyone leads a complicated life, even without the variables of chronic illness. Those living with a multi-symptom disease, however, have times where we envy those with a cancer that is well researched. VHL has no middle, just a beginning and an end.
Symptoms come in spurts.
Sometimes they crop up after years of inactivity. Sometimes they appear several times within a year. People die when their bodies become overwhelmed by disparate tumors and problems associated with the disease. Because VHL has so many varied symptoms, it is difficult to condense into a narrowly worded definition, and even harder to diagnose. Over the years, doctors in good faith have given me wrong information.