Atypical Hemolytic Uremic Syndrome

     By

      The Foundation for Children with      Atypical HUS

     A Message to the Family

Atypical HUS is a very rare, potentially life threatening disease. There is no cure, only supportive treatment and the cause in many cases has yet to be identified.

You must find a good hospital, preferably a teaching hospital - with an experienced team of specialists - a nephrologist – a physician board certified in kidney disease; a hematologist, a physician board certified in blood disorders; and possibly a renal dietitian to help with diet specific to kidney failure and a social worker to make sure you have access to all necessary healthcare. The team must be proactive in monitoring the laboratory tests specific to both the hematological/blood and renal/kidney systems. You will have a life long association with this team of specialists.

The most important aspect of this relationship is communication. Your team must be able and willing to explain every aspect of the disease, its treatments and work with you as a partner in the process of living with this condition.

Increasing knowledge about the origin and clinical presentation of thrombotic microangiopathies (TMAs), microvascular occlusive disorders characterized by systemic or intrarenal aggregation of platelets and mechanical injury to erythrocyte or red blood cells such as atypical HUS the has led to the realization that despite diverse causes and clinical associations, this disorder shares similar clinical manifestations with other conditions and it is hoped that by investing in TMA research all its causes will benefit, especially atypical HUS which is very rare but devastating.

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