If I have pheochromocytoma or paraganglioma, is there a risk that my children will also have the condition?
Up to about 24% of patients with pheochromocytoma or paraganglioma will have a family member with the same condition. Inherited mutations in 6 genes have been found to be responsible for the disease. These genes are von Hippel-Lindau (VHL) gene, Rearranged during transfection (RET) gene, neurofibromatosis type 1 (NF-1) gene, and succinate dehydrogenase subunit (SDH) genes (SDHB, SDHC, SDHD). Genetic testing is recommended for most patients with pheochromocytoma or paraganglioma. Once a specific mutation is found, stepwise family testing is advised (eg, parents first). When relatives are found to have the mutation, additional testing is suggested to determine whether pheochromocytoma or paraganglioma is present.
