I was a very healthy, active guy for a long time and 27 years a carpenter when Castleman disease knocked me down in just a few days to the point of struggling for my life on a ventilator and feeding tube in the ICU, with every major organ in my body failing. The fight from that hospital room back to a life I can laugh and enjoy as I do today has been the hardest I’ve ever known. Dr. David Fajgenbaum and the CDCN were directly responsible for the diagnostic criteria that my doctors used to take my critical state from defensive and stabilizing measures to direct treatment of the problem. That diagnostic criteria was published on the very day I was admitted to the hospital with this beast mauling my organs. And earlier on the day I began treatment, I began donating blood and tissue to the CDCN.

As a former Marine, I know what it’s like to volunteer for something that could kill me. What I’d never experienced was volunteering for something that could save my life, and it was David and the CDCN who first offered me the opportunity to do that. At that critical state lying in the ICU, just off the ventilator, tied by needles and tapes to a litany of chemicals and machines, venturing into my first tenuous bites of solid food in nearly a month, my mind was at times frantic, wanting so badly to just tear it all loose and get back to the very most basic blessings of being alive: breathing, walking, eating, hugging without assistance. When David first visited me in my room, I immediately clutched at the hope that I could get there, where he is: vital, alert, driven. In my foremost mind, I was continually going back to the state of fitness and ability I’d willfully enjoyed for decades. I wanted the nurses and doctors to see that I was not this frail, swollen wretch lying in my bed helpless, laid out by this deadly co-pilot of my immune system. I was a guy who took up vigorous vocations and hobbies, fit and laughing and downright hard to hurt. This is what was fighting its way to the surface when I told my physical therapist, “I AM an AVID CYCLIST!!” So it was difficult to find words when David asked if I would be willing to donate samples for research. It was so much more than just ‘yes’. This was a quietly thrilling opportunity to fight, not just to survive, but to fight back, to strike a blow against sickness and fear and being singled out by the unluck of the draw. An opportunity to step up from my fight to Our Fight.

I recently passed two years in remission, and during this time, the CDCN has continued to make substantive and impactful advancements in identification, treatment, and increased understanding of the genetics of Castleman disease. From researchers to patients’ families, the CDCN has helped connect us all. It makes me very hopeful, getting to know other patient’s stories at various stages of Castleman diagnosis and treatment, and following the progress of the world’s medical researchers and data scientists engaged in the battle.

If you’re able to donate to enable this research, or if you’re a patient who might donate samples and medical data, I hope you will. This isn’t just the CDCN’s fight or my fight. It’s Our Fight.

Arrow Shape Facebook Instagram Twitter Youtube Play Arrow Left