On 19 October 2023, I was diagnosed with Castleman’s Disease. I had been hospitalized one month earlier with a ‘celiac crash,’ after a long Sunday run. I am celiac and a lifetime runner. I had been out on a long run and I was feeling pretty rubbish, as I had been feeling pretty rubbish for the past 4-6 weeks. Then, after a month of many scans, tests, biopsies and a hospital transfer, I was diagnosed with Casteman’s Disease. However, they had to confirm the diagnosis, which took too long; and, I went into the ICU approximately 10 days later with kidney failure and a gain of 20 kg from inflammation. Without a full diagnosis, they had to start me on high-dose cortisone, tocilizumab (IL-6) and rituximab, because I was dying. However, they did the right thing.
My final diagnosis was Castleman’s Disease idiopathic multicentric TAFRO, and it was qutie severe. My main doctor had previously had four Castleman’s patients, but I was her first TAFRO. I have been incredibly fortunate with an amazing level of care and knowledge to support my recovery. I was also very lucky that I responded well to the medication. I was finally released from the hospital on 20 November.
When I was released, I was receiving IL-6 and rituximab every week and my body was destroyed from steroids, diuretics and inflammation. I was still holding 12kgs of water and could barely walk up the stairs of my house – I had a long recovery ahead of me. Yet, I was home and I could start the work. Being a runner, my aim was to start running as soon as possible. I knew my body needed to move to heal. I immediately started doing yoga and stretching, and practicing walking up my stairs. I started seeing a physio a week after leaving the hospital. When I lost the water, I was down to a very thin 52kgs, 10kgs less than my normal weight. I had lost a lot of muscle from the steroids. 
I kept going. I started running two weeks later, just before Christmas. I was back to my normal weight just after the new year. I was running 6 days a week by early February. My kidneys, liver and spleen all completely healed. They had thought I’d have permanent kidney damage (grade 3), but they repaired. I ran the Berlin Marathon four days after my 1-year anniversary of being admitted to the hospital for Castleman’s. It was not my best marathon, but it was my most important. On the starting line, I turned to my friend and said, “I’m here and I’m not dead. We’re running the Berlin Marathon.” It was incredible. In that race, I qualified for the New York Marathon in 2025.
I still have a long road to recovery. I receive regular IL-6 treatments and I have to take care, but my life quality is very good. The image attached is my journey. The top left is me, right before going into the ICU, October 2023. You can see I had them decorate my IV pole for Halloween. Here, I was 82 kg from inflammation, having kidney and liver failure, and heading into the ICU for dialysis. The right image is me finishing the Berlin Marathon, 11 months later. You can see my port and scars from lymph node biopsies on my right shoulder. The bottom left is me, one week after the marathon, receiving my IL-6 treatment.
I have been incredibly fortunate in my journey, given my very good health before I was sick and my amazing support network. Not everyone is so lucky. This why it’s important to fight for more research and better knowledge of this disease. As with anything and everything, ongoing support is needed.