In the fall of 2018, after returning from a family vacation to Disney World, Joey became ill with fevers, some facial swelling and abnormal lab results. He was admitted to CHOP where numerous tests were run that ruled out many, but didn’t diagnose anything. One week after being admitted, a bone marrow and lymph node biopsy was conducted which definitively diagnosed with the most severe type of CD, multicentric Castleman disease. Treatment started immediately. After trying three different lines of treatment, Joey started to improve and was discharged after spending almost 4 weeks at CHOP.
Unfortunately, he was readmitted just a week later after suffering a rare complication called PRES that presented with high blood pressure and seizures. After a week in the ICU and over 2 additional weeks in the hospital, Joey was discharged.
He takes daily medications and receives bi-weekly infusions to treat his Castleman’s Disease. He has donated his blood (post-diagnosis but pre-treatment) and several times since to the CDCN for research.
Your donation will have a direct impact on Joey and the quest to cure his Castleman disease. There is so much still unknown about this disease so every dollar counts! Thank you so much for your support!