The enigma of nephrogenic systemic fibrosis

Nephrogenic systemic fibrosis is a severely physically disabling phenomenon experienced by a specific subset of patients with renal disease. Several of the 200 reported cases worldwide are currently treated within the author's facility. My colleagues and I have witnessed first-hand the life altering effects of NSF on our patients' physical, psychological, and social health, not to mention the unseen effects on family dynamics and changes in the interpretation and function of individual roles. Outside of the ESRD community, NSF is a largely unknown entity, likely due to the infrequency of incidence and relatively cohorted population. Despite the infrequency, we in the nephrology specialty must spread awareness of this condition and share our common knowledge and experiences to help those suffering from NSF to maintain their quality of life. In collaboration with the Centers for Disease Control (CDC), the Yale University International Center for NSF Research has established a website (www.icnfdr.org) for reporting of new cases of NSF/NFD. Until a causative agent is irrefutably identified, it is of the utmost importance that new cases be reported immediately. We expend a great deal of effort and gain valuable experience in helping our patients live their lives as richly as possible. If we as professional nurses share our knowledge and experience in managing the life-altering effects of NSF, our patients as a collective whole will benefit. It is, therefore, our responsibility to collaborate within and outside of the profession to reduce the number of new cases of NSF and help existing patients live their lives with the highest quality standard possible.