Christopher "Chris" Nelson, a 24-year-old young man, is currently fighting for his life against Castleman disease, a rare and relatively new condition in medical literature. After enduring 16 days of uncertainty while doctors worked tirelessly to reach a diagnosis, Chris is now focusing on treatment. However, the road ahead comes with its share of challenges. With medical bills from his inpatient stay and upcoming treatments on the horizon, we are reaching out for support to help ease the financial burden he faces during his recovery.
On January 7th, 2025, Chris Nelson was admitted to Essentia Health-St. Mary’s Medical Center after suddenly falling ill. Despite three days of inpatient care, his condition continued to worsen as doctors struggled to identify a clear diagnosis. He was then transferred to the intensive care unit (ICU), where he remained for five days. During this time, he developed thrombocytopenia, requiring a platelet transfusion along with red blood cell transfusions to correct his low hemoglobin levels. He also experienced anasarca, which caused severe swelling and third spacing in his body. As a result, Chris received four paracentesis and two thoracentesis procedures to remove excess fluid from his abdomen and around his lungs. The fluid around his lungs made breathing difficult, and he has been given supplemental oxygen to help him breathe more easily. He has had ongoing renal complications and a persistent fever throughout his stay.
Having done every diagnostic test Essentia Health was equipped to run, to no avail, Chris was recommended for transfer to the University of Minnesota to consult with additional specialists. He was swiftly accepted for transfer and transported via ambulance from Essentia Health-St. Mary’s Medical Center to M Health Fairview University of Minnesota Medical Center on January 16th. On January 21st, Chris underwent surgery for an excisional biopsy of three lymph nodes. January 23rd, lab results came back and he was officially diagnosed with TAFRO syndrome, a subtype of idiopathic multicentric Castleman disease (iMCD-TAFRO).
Now that he has received a diagnosis, Chris has just begun anti-interleukin-6 (IL-6) therapy which has proven an effective treatment for iMCD-TAFRO. Chemotherapy is also an alternative if he doesn’t respond to IL-6 treatments. He should be cleared to return home within two weeks to continue his treatments there. In total, he will require six to eight weeks of treatment while being closely monitored. He is also on extremely high doses of IV steroids which could create complications as he has type 1 diabetes. His mother Janet Nelson has been by his side since his initial admittance. All contributions received will go towards medical expenses and to help alleviate the financial strain of their time away from work.
It has been a trying time for the Nelsons but their faith remains strong and good has come from their tribulation! Given its rarity, research samples are difficult to come by, especially those taken at the most severe stages of the disease. Chris has agreed to donate tissue and blood samples to contribute to research on Castleman disease. The first reported case of TAFRO syndrome was made in 2010 and there is still much to learn.
Thank you for your support!!
