Autoimmune Encephalitis Alliance Inc

Joe Calcagno, who is part of the Healthcare Team in NYC, was a healthy 41-year-old in 2017, before being diagnosed with Autoimmune Encephalitis (AE). Joe’s variation of the disease came on stronger than most, and without warning (the likelihood of acquiring such as rare disease isn’t exactly known, but it is greater than 1:1,000,000).  Like many Autoimmune cases the exact origin, and why Joe’s body began attacking itself is unknown. 

Over the course of 2 weeks Joe went from being healthy to being placed in a medically induced coma for nearly 4 months.  Many go undiagnosed for months, years or even decades, but Joe’s rapid decline may have played a role in his remarkable recovery.  After making it though the acute phase, Joe was transferred to an Inpatient Rehab Hospital where he spent another 3 months relearning everything from moving a finger, to walking, to breathing, etc.  During those additional months, Joe sought countless Physical, Occupational, and Speech Therapy visits.  

Through Joe’s journey he came across the Autoimmune Encephalitis Alliance, and appreciated the support they provide, not only to patients, but their families as well.  After 1 support group meeting, Joe volunteered to be the NY Metro Area’s support group leader, and it’s his passion to help bring awareness to this horrific disease.  

Joe, through the help of his family, is working on telling his story through the AE Alliance’s webpage (please check back for Joe’s full story).  Today there are still unknown Antibodies that are causing Encephalitis, and with more awareness, research, and treatment plans, Joe hopes everyone has a chance at making a full recovery with less struggles.      

Joe is extremely thankful for your support, and by sharing this story we are raising awareness.  If you are interested in learning more ways to get involved please feel free to reach out to Joe!