Although there is no cure forVon Hippel-Lindau(VHL) disease, the symptoms it causes can be treated.

Often, the most common treatment is surgery to remove the cyst or tumor causing the problem.

However, maintaining a healthy lifestyle can be helpful.

Teen with Von Hippel Lindau disease discusses it with doctor

mixetto / Getty Images

However, discuss any OTC medications or supplements with your healthcare team.

Some may interact with medications given for VHL.

It can be used when treatment is needed for these tumors, but they dont require immediate surgery.

Welireg works by inhibiting hypoxia-inducible factor-2 alpha,which is a pathway cells use to grow abnormally.

By blocking this pathway, the tumors arent able to have an adequate blood supply to continue to grow.

For brain or spinal cord hemangioblastomas or cysts, surgical removal of the entire lesion may be required.

Localized treatment, such ascryoablationor radiofrequency ablation may be done when kidney tumors are small.

During cryoablation, special equipment is used to freeze the tumor to kill the cells.

During radiofrequency ablation, a similar procedure is used to burn the cancer cells.

These tumors can also cause balance problems and surgical removal of the tumor can prevent balance from getting worse.

Before using any CAM, discuss it with your healthcare team.

Some CAM treatments may interact with medications and procedures you are undergoing.

Summary

VHL is a genetic disorder that doesnt have a cure.

It requires routine imaging of the body to evaluate for the presence of tumors.

A medication called Welireg was approved in 2021 to treat some tumors triggered by VHL.

Surgery is a common intervention for VHL.

It is used to treat many of the tumors and cysts sparked by this disease.

National Organization for Rare Disorders.Von Hippel-Lindau disease.

American Cancer Society.Risk factors for kidney cancer.

2018;(38):88-100. doi:10.1200/EDBK_200093

de la Torre BG, Albericio F.The Pharmaceutical industry in 2021.

An analysis of FDA drug approvals from the perspective of molecules.Molecules.

2022;27(3):1075. doi:10.3390/molecules27031075

Food and Drug Administration.Welireg label.

National Comprehensive Cancer web connection.NCCN guidelines for patients: neuroendocrine tumors.

National Comprehensive Cancer connection.NCCN guidelines for patients: kidney cancer.