Von-Hippel Lindau Disease (VHL) Care

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Having von Hippel–Lindau disease, or VHL, can be overwhelming. You may develop tumors or cancers in up to 10 different parts of your body, from your brain and spinal cord to your pancreas and kidneys. You don’t need just one trusted provider to treat you; you’ll need several. Where do you start?

At UVA, our providers have the training and expertise to tackle this complex and scary condition.

We’re here to help you:

  • Understand what having VHL means and what to expect
  • Develop a systematic tumor-surveillance plan
  • Prioritize treatment
  • Find perspective

We can’t simply remove all the tumors all at once to cure this disease. Effective care for VHL requires knowing when, as well as how, to deliver treatment. It’s our goal to earn your trust and treat you as a whole person, so that we can properly manage your condition together.

Excellence in VHL Care & Logistical Support

We know that having VHL can feel like a lot of work. Because  we are a VHL comprehensive clinical care center, you don’t have to do it all alone. We offer a single point of contact who will help coordinate all of your appointments.

We’re recognized by the VHL Alliance as a center of excellence in providing comprehensive care to both pediatric and adult patients with VHL. We also provide genetic counseling for family planning.

VHL Experts Coming Together

VHL can cause tumors throughout your body (also called a multiple neoplasia syndrome). VHL can result in other issues, too, like:

  • High blood pressure, due to adrenaline-secreting tumors
  • Fertility problems, from tumors on your reproductive organs
  • Vision loss, when tumors appear on your retina

The fact that VHL can appear in very different parts of your body makes both diagnosis and treatment challenging.

At UVA, our VHL experts have access to the specialists and resources needed to understand your specific situation. Working together, we can connect the dots when, for instance, VHL causes issues both in your brain and in your pancreas. This team may include expert audiologists, otologists, urologists, oncologists, endocrinologists and pancreas/endocrine surgeons.

Will I Find Support?
A couple finds support in each other while a provider delivers a VHL diagnosis.

VHL is a rare disease: Only about 1 in 35,000 people born every year have VHL. We’re here to provide you the support of a community of people who understand what you’re going through.

 

Will I Get VHL?
A woman learns of her risk of inheriting VHL, a rare genetic disease.

If either of your parents have VHL, you have about a 50% chance of inheriting it. We can give you a genetic test to see if you have the specific mutation that causes VHL.

Are There New Treatments?
UVA experts use high-tech software to view brain scans, analyze tumors and treat VHL.

We keep up with new research and treatments so that we can best care for you and your family.