On Feb. 25th, Heather Kirkwood, Carmen Camacho and Frankie Feliciano were joined by HPS Network member Rebecca Rosado to give a presentation about HPS and the HPS Network to the pulmonary team at Brigham and Women’s Hospital in Boston. Unlike many groups, the pulmonary team at this hospital was already quite familiar with Hermansky-Pudlak Syndrome. Not only do they have several HPS patients, but they performed a lung transplant for Rebecca this past December.
Rebecca is now doing wonderfully with her new lungs.
Heather Kirkwood gave the Powerpoint presentation to the group and Carmen and Rebecca added their own stories about diagnosis and living with HPS. The group expressed how thrilled they were that these doctors were willing to help those with HPS and perhaps become a center where other HPS patients could be referred. Currently another HPS’er is awaiting a lung transplant at the same hospital.