Before Castleman Disease, I was a triathlete and distance runner. I loved racing and training with my brother and my friends. Anything outside: hike, bike, kayak, swim, run, walk, I am in. Over time systems failed: immune disorders, nutritional deficiencies, neuropathy, neuromuscular issues, weakness, fatigue, night sweats and wasting eventually overwhelmed my body and if my doctor had not treated me with Siltuximab, I would not be here today.
I still struggle with several issues that require a team of specialists and a disciplined approach to keep me mobile and working, but ultimately I want more. I want to get my life back. I was about to sign up for a Half Ironman with my brother, when everything fell apart health wise and I have never regained my strength or endurance.
When I started treatments, I did not know it,, but my brother signed up for a full Ironman. Seven months after he raced at the Woodlands Ironman, he gave me his medal. He wrote me a letter that said I earned it, that he did it for me, that ever time he did not feel like it, he trained for me because he knew I would be right there with him if I could. I want to be in the race, on the mountain and in the lake unrestrained and free from pain and medical procedures dictating my schedule. I still move as much as I can whenever I can, but the science needs to catch up with us and a cure should include a full quality of life.
This photo was the finish of his Woodlands Ironman May 2018 (I started treatment October 2017).