Devon

Devon was diagnosed with atypical hemolytic uremic syndrome (aHUS) in March 2012 at 8 years old. aHUS is a mis/undiagnosed ultra rare blood disorder with approximately 300 patients in the US and 1,000 worldwide. She spent 5 long, agonizing weeks at our wonderful children's hospital.

Months before Devon was diagnosed, the first FDA therapy drug, Soliris, was approved. Devon receives treatments every 2 weeks at our OPI Center. Devon is as tough and strong in will as she is sweet and kind in heart.

~Diane, Devon’s Mom

Atypical Hemolytic Uremic Syndrome

Atypical hemolytic uremic syndrome (aHUS) is a syndrome characterized by three major problems areas: 1) progressive renal failure 2) problems associated with red blood cell and platelet counts and 3) problems that occur in the vascular system. Atypical HUS should be differentiated from “regular or typical” HUS because the diseases have quite a few differences. Regular HUS is typically caused by the E. coli virus, and while it is quite a severe disease, if the patient can recover from the disease, they may live the rest of their lives without another episode. Atypical HUS patients, however, frequently have recurring bouts with the disease.

Atypical HUS is not caused by an external agent (such as a bacteria, virus, etc). Instead, some sort of internal chain of events sets the disease off, and the syndrome becomes active. The syndrome is not well understood. In many cases, it has been identified as a genetic problem due to an irregularity in several suspect genes. In these cases, there appears to be strong inherited tendencies. In other cases, the disease appears out of nowhere.

Artist: Tom Hughes