Expectations for the Patient

Patients with NEMO have a number of issues that make prognostication of their clinical course difficult. First, the relatively recent recognition of the disease and rarity mean that little data exist to give any concrete guidance with regard to long-term outcomes. Second, we do know that amongst patients with the diagnosis, there is wide variability in the severity of the immune deficiency. While some patients can expect relatively normal life expectancy, many patients have severe forms of the disease with both infectious and non-infectious complications. These non-infectious complications have been particularly difficult to understand as these entities often mimic infection during presentation. Further research is needed to fully understand both the immune defects and immune dysregulation observed in both NEMO in general as well as with individual genotypes. Hematopoietic stem cell transplantation has been used for NEMO patients with varying outcomes.

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