Atypical Hemolytic Uremic Syn. community

Atypical Hemolytic Uremic Syndrome or aHUS is an ultra rare autoimmune disorder. Below you'll find information and insights into living with a diagnosis of aHUS.

U of Iowa's aHUS Family Conference Videos

Written by Linda, published 3 months ago.

Dr. Carla Nester's topic: Definition of aHUS, Diagnosing aHUS, Overview of Complement

 
Dr. Christie Thomas' topic:  Treatment of atypical HUS:  Plasmatherapy, Eculizumab (Soliris), Options for ESRD, Transplants, Data from published studies/reports 
 
 
Dr. Richard Smith's topic:  Atypical HUS, Genetics, and the Complement Cascade 
Dr. Smith is Director at MORL (Molecular Otolaryngology & Renal Research Laboratories) (genetic screening for aHUS patients) 
 

The University of Iowa has robust patient and research programs that provide cutting edge information and services to aHUS patients and their families (see The University of Iowa Children's Hospital).  At an October 2011 aHUS Family Conference sponsored by The Foundation for Children with Atypical HUS, those in attendance at the University of Iowa heard presentations from Dr. Richard Smith, Dr. Carla Nester, and Dr. Christie Thomas regarding a variety of topics of great interest to rare disease patients with atypical hemolytic uremic syndrome.

 

The Foundation for Children with Atypical HUS wishes to thank the presenters for providing the latest research and data in clear, concise detail about vital information regarding aHUS diagnosis, treatment, genetics, and disease mechanics.  Complex issues regarding this complement-mediated disorder are now presented in a video format that serves to inform patients, families, and medical personnel. 

We appreciate the efforts of Kent Pope and his staff at Prairie Moon Studios for their fine work to bring this information to our global aHUS community.

Written by Linda, published 3 months ago.

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    topic, published 3 months ago

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    topic, published 3 months ago

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    Hello

    Thanks Nicholas for directing me to this community. Already as with the Foundation for children with aHUS site I have found much information to absorb.

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    Soliris
    topic, published 3 months ago

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    Bonjour a tous,et avec du retard,une heureuse année .Depuis 1 mois,nous avons dus arreter les injections de Soliris pour Constance,car elle devenait allergique,elle ne le supporte plus!!!! J'ai très peur qu'elle rechute !

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    Soliris
    topic, published 3 months ago

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    Good evening, this is my third attempt and I hope that this time will be the good one: when SOLIRIS was injected on January 3, as soon as the infusion began, Constance began coughing, had trouble swallowing, was extremely nauseous, usually that would happen at the "rincure", but not systematicall...

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    Refers to this recently published article:
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    AIRG France's Annual Day
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    topic, published 8 months ago

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    aHUS expert from France interviewed during the 2011 European Nephrology Congress in Prague: http://www.primeoncology.org/2011/prague_2/index.html

    Merci Nicolas