ICDO is grateful to Castleman’s Disease patients Billy Wayne Hook and Greg Pacheco, and their families, for participating in the 2009 Summit and for permitting their stories to be shared online.

BILLY WAYNE HOOK

After suffering from a variety of serious and somewhat mysterious symptoms, Billy Wayne Hook was diagnosed with Multi Centric Castleman’s Disease in January 2007.   Because of the rarity of his disease, it took almost two years and visits with many doctors in multiple hospitals before Dr. Luis E. Fayad at MD Anderson confirmed his diagnosis.   When Wayne arrived at MD Anderson, he was out of options and his life expectancy was down to days. After a last ditch effort to control his symptoms ended with a severe allergic reaction, Wayne needed oxygen, was wheelchair bound, and had catheters in both lungs.  Consequently, Dr. Razelle Kurzrock and the staff at MD Anderson fought diligently to get him accepted in a clinical program approved by the FDA. Thanks to them, Wayne is now stabilized and continues with a set treatment regimen using the Anti-IL6 drug.

Wayne shares that the most challenging aspect of his disease was the change he had to make in his lifestyle.  Prior to being diagnosed with Castleman’s Disease, Wayne was very active, working 60 hours a week.  His diagnosis forced him to slow down and he now focuses more time on his family.  In addition, because of his gratefulness and his desire to give back, he has become a patient advocate in cooperation with MD Anderson Hospital.  Wayne makes himself available as a resource to other patients who have been newly diagnosed with Castleman’s Disease.  They can relate to him and ask questions about his experiences and he has an opportunity to offer them hope.

GREG PACHECO

Read Greg’s story as he shared it with the 2009 Castleman’s Disease Summit audience here.