The Spokemen for VHL awareness.
Donation protected
This summer, my friend and I will be riding our bikes across the United States, from Portland Maine to Seattle, Washington to raise awareness and research money for Von Hippel-Lindau disease, otherwise known as VHL.
VHL is an inherited disorder in which tumors will develop in one or more parts/ organs of the body. Many of these tumors involve the abnormal growth of blood vessels. While blood vessels normally branch out like trees, in people with VHL little knots of blood capillaries sometimes occur in the brain, spinal cord, or retina. These little knots are called angiomas, or hemangioblastomas. In other parts of the body the tumors of VHL are called by other names.
These tumors themselves may cause problems, or problems may develop around them. For this reason they need to be carefully monitored by your medical team.
VHL is different in every patient. Even in the same family, people may show only one or several features of VHL. Since it is impossible to predict exactly which one or more manifestations of VHL each person will have, it is important to continue to check for all the possibilities throughout a person’s lifetime.
VHL is an inherited disorder in which tumors will develop in one or more parts/ organs of the body. Many of these tumors involve the abnormal growth of blood vessels. While blood vessels normally branch out like trees, in people with VHL little knots of blood capillaries sometimes occur in the brain, spinal cord, or retina. These little knots are called angiomas, or hemangioblastomas. In other parts of the body the tumors of VHL are called by other names.
These tumors themselves may cause problems, or problems may develop around them. For this reason they need to be carefully monitored by your medical team.
VHL is different in every patient. Even in the same family, people may show only one or several features of VHL. Since it is impossible to predict exactly which one or more manifestations of VHL each person will have, it is important to continue to check for all the possibilities throughout a person’s lifetime.
Along the ride, we'll be posting updates and blog posts to our website at Http://www.thespokemen.com
Organizer
Chip Ormsby
Organizer
Bay City, MI
