An Auburn man is one of 39 people in the world diagnosed with DPPX antibody-associated encephalitis.
CJ Ledbetter, 33, is on a ventilator at East Alabama Medical Center. His mother, Kim Watkins says they bounced around for about three years from specialist to specialist before being diagnosed at the Mayo Clinic in Rochester, Minnesota.
DPPX is a potassium channeling antibody that attacks the central nervous system. According to the Journal of Neurological Research and Therapy, DPPX was first described in 2013, the year CJ was diagnosed.
“I think he was number 5 or number 7 I can’t remember in the world that had been diagnosed,” said Watkins.
Now there are 39 cases. The symptoms include hyperexcitability that’s usually preceded by diarrhea, other gastrointestinal symptoms, weight loss, memory loss, and loss of balance. CJ, a former athlete, usually kept his weight around 190 pounds, but dropped to below 100 pounds shortly before he was diagnosed.
Kim remains at his bedside and makes frequent trips to the hospital’s chapel, praying her son will not become a statistic of this rare disease that doctors really don’t know much about.
“There’s been days that I want to throw my hands up and there’s been days that I’ve questioned God but then I realize that’s just the Devil, playing. He finds a little hole and gets in there and plants that seed of doubt.”
But Kim trusts God, and says if her son doesn’t make it he still has a purpose.
CJ’S treatments as of now include Plasmapheresis, retuxmab (chemo) and infusions of Intravenous immunoglobulin or IVIG.
There’s a GoFundMe page set up for CJ and his family.