This article discusses the symptoms, diagnosis, treatment, and prognosis for people with VHL.
Symptoms usually appear in a person’s mid-20s.
These are benign tumors calledhemangioblastomas.
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The disease was named in 1936, but the term was not commonly used until the 1960s.
What Causes VHL?
People with VHL are missing or have a mutation of the von Hippel-Lindau gene.
VHL can be diagnosed through genetic testing or a simple blood test.
What Are the Treatment Options for VHL?
Even if the growths are not cancerous, they can still lead to symptoms and affect your health.
This jot down of monitoring is called “active surveillance.”
This surveillance requires you to go to your follow-up, screening, and imaging appointments.
If treatment is needed, it is likely to involve surgical removal of the tumors, when possible.
Treatment may also include radiation therapy to shrink some of the masses.
Regardless of life expectancy, VHL is a serious disease.
They are usually benign, but may be cancerous in some cases.
A Word From Verywell
The outlook for people with VHL has improved significantly in recent years.
With close monitoring and treatment when necessary, people with VHLcan live fulfilling and healthy lives.
National Organization for Rare Disorders.Von Hippel-Lindau disease.
Genetic and Rare Diseases Information Center.Von-Hippel Lindau disease.
University of Rochester Medical Center.Von Hippel-Lindau syndrome.
National Cancer Institute.Active surveillance.
National Cancer Institute.Belzutifan approved for tumors linked to VHL.
2017;54(1):11-18. doi:10.1136/jmedgenet-2016-104058
VHL Alliance.Latest research.
