Our daughter Lily, age 11, was just diagnosed with aHUS in February 2014. After 2 bouts of the flu which were her trigger, she suffered total kidney failure in February 2013, leaving her in a coma for a week and on on round-the-clock dialysis for two weeks. She spent a full month in the hospital and 3 months on dialysis 3 a week. She has been on 7-8 daily blood pressure medications since then and her doctor made the final diagnosis of aHUS (based on clinical observation, no genetic confirmation yet) just a few months ago. Lily started on Soliris on March 20 and we look forward to good results.
We attended a NORD Conference in Jersey City this past weekend and found it a very enlightening experience and very supportive environment of other families who are dealing with this same very serious and life-changing illness..
We look forward to participating in the community here.