The Rocky Road to Diagnosis

Members share their stories

Boston, Massachusets, June 2007

Several people affected by pheochromocytoma share the stories of their journeys to diagnosis.

Pheochromocytoma remains one of the most difficult to diagnose of the VHL-related tumors. VHL is only one of five possible genetic causes, and 70% of pheos occur in te general population. It is estimated that at least half of pheos are not diagnosed until autopsy -- if indeed at all.

President Eisenhower had a pheo. This was not revealed until the results of his autopsy were announed in 2008. Now we understand that this is what underlay his heart disease.

We appreciate the courage of these families in sharing their stories with us. We as families need to know we are at risk, and work with our doctors to achieve a timely diagnosis. Perhaps we can help the doctors learn so that they will diagnose pheos earlier in other people.