VHL, or Von Hippel-Lindau disease, is characterized by multiple tumors in the blood vessels and can affect many organs throughout the body. At UVA, we have a highly skilled team of experts in fields as diverse as ophthalmology and genetic counseling, providing care for patients with VHL throughout their life.

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ASHOK ASTHAGIRI: VHL or Von-Hippel Lindau disease is a genetic condition characterized by the formation of multiple blood vessel tumors in many organs of the body. These include the eye, pancreas, kidney, lung, liver, and some of what are called the pelvic organs or adnexal organs. We’re one of 10 comprehensive centers in the United States that provide care from birth to older age, so across a personÕs life.

MARTHA THOMAS: About 80 percent of people with VHL actually have a family history of it. So if a parent knows that they have VHL, we would want to make sure that their children are offered testing to see which of their children have it, and sometimes more importantly, which of their children donÕt have it and don’t need that extra surveillance. However, about 20 percent of people with VHL do not have a family history of it, and so most of those patients are identified a little later in life when some of the symptoms start to be diagnosed. The frequency of their screenings is really dependent on their age and their presentation. Typically, we like to see patients annually, but not all screenings are done annually. So that’s where, at those annual appointments, we really individualize an approach based on the clinical presentation as well as the family history.

ASHOK ASTHAGIRI: When treatment is needed, the treatment can really vary from surgery, which really is the backbone for treatment of most of the nervous system tumors, to various types of targeted chemotherapy. Understanding how those individual tumors behave lets us develop an individualized treatment plan.

EUGENE SHILDKROT: Several treatments are available for the lesions of VHL in the eye, depending on the size. If it is a smaller lesion, freezing treatment or laser could be sufficient to control the disease. For larger lesions, we use injection medications similar to those used in macular degeneration or vein inclusion to try to control the exudation.

MICHELLE FLYNN: It’s world class health care. So if you’ve been diagnosed with VHL, you probably already realize you’re going to have to see a number of specialists throughout the course of treatment. Those specialists are right here at UVA. We work with the patient and the patient’s family. Family being defined however the patient defines it. So family can mean your neighbors who are helping you through this process, it can mean your church family, or it can mean those people you’re related to. We could meet with them only when they’re coming for appointments. We could provide telephone support. We could meet with a patient as frequently as weekly or twice a week if that’s what it takes to meet their emotional needs.

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Von Hippel LIndau disease

Von Hippel-Lindau syndrome (VHL) is a hereditary condition associated with tumors arising in multiple organs. The tumors in VHL include hemangioblastomas, which are blood vessel tumors of the brain, spinal cord, and eye. The eye tumors are also called retinal angiomas.

What is the connection between von Hippel-Lindau syndrome and kidney cancer?
Dr. Viraj Master, Winship Cancer Institute of Emory University

Visit www.kidneycancer.org for more information and resources.

Von Hippel Lindau disease (VHL) is an inherited gene mutation that causes tumors to form in areas containing large numbers of blood vessels like in the eyes, brain, spinal cord, kidney, pancreas and inner ear. Eric Jonasch, associate professor in MD Anderson Cancer Center's Genitourinary Medical Oncology Department, is one of the few doctors in the world that treats this rare disease and he discusses VHL in this episode.

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