Atypical Hemolytic Uremic Syn. community

Here's a selection of information from patients & professionals to better understand Atypical Hemolytic Uremic Syn..

Atypical Hemolytic Uremic Syn. resources

Atypical Hemolytic Uremic Syn. Frequently Asked Questions

Here are some of the most frequently asked questions and their answers:

If you are a patient or carer with a question about living with aHUS, about treatments, or other relevant information please email your question to [email protected] and we will put it to the specialists who have agreed to answer your questions from time to time.

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When should one consider testing for aHUS?

Atypical HUS is considered genetic when two or more members of the same family are affected by the disease at least six months apart and exposure to a common triggering infectious agent has been ex...

Tags: Genetics

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What happens to the body during an aHUS attack?

With aHUS the red blood cells break apart and these cell fragments travel to the kidneys, making tiny microscopic clots causing severe anemia and kidney failure. When the kidneys fail to work, the ...

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What is aHUS?

Atypical Hemolytic-uremic syndrome (aHUS) is a syndrome characterized by three major problem areas:

1) progressive renal failure

2) problems associated with red blood cell and platelet counts...

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Atypical Hemolytic Uremic Syn. Patient Groups

These are patient organisations that have experience and expertise in Atypical Hemolytic Uremic Syn.. They are supporters of this website. Contact them for more information on their activities.

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  • Foun. Children with aHUS

    The Foundation for Children with Atypical HUS encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome. Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.

    Contact Foun. Children with aHUS

  • AIRG

    Association for Information and Research on Genetic Renal Diseases The AIRG organization is present in France, Spain, Switzerland, Belgium. AIRG aims to bring together patients and their families who suffer from genetic kidney disease. Together we are stronger.

    Contact AIRG

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Atypical Hemolytic Uremic Syn. Documents

Resources, documents and detailed informations on Atypical Hemolytic Uremic Syn.. In this section you can download brochures, ask for printed documents or find useful links.

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  • aHUS: The Situation in 2011

    Article in French language, courtesy of AIRG France

    Author/Foundation: Chantal LOIRAT, Fadi FAKHOURI, et al.

    Year of publication: 2011, French

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  • 3rd International Conference Program HUS & MPGN & related diseases

    Current diagnosis and therapy of hemolytic uremic syndrome (HUS) membranoproliferative glomerulonephritis (MPGN) and related diseases Program includes poster descriptions.

    Author/Foundation: www.hus-online.at

    Year of publication: 2011, English

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  • AHCF NEWSLETTER Alternating Hemiplegia of Childhood Foundation SPRING 2011 Volume 20, No. 1

    Author/Foundation: AHC Foundatiom

    Year of publication: 2011, English

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  • Eculizumab safely reverses neurologic impairment and eliminates need for dialysis in severe atypical hemolytic uremic syndrome

    Abstract: This case report describes how eculizumab reversed neurologic impairment and improved renal damage in severe atypical hemolytic uremic syndrome. A 50-year-old female, after presenting with diarrhea and abdominal pain, developed pancolitis, acute renal failure, and thrombocytopenia. The patient underwent total abdominal colectomy. Pathology confirmed ischemic colitis with scattered mesenteric microthrombi. Due to mental and respiratory decline, she remained intubated. Continuous venovenous hemodialysis was initiated. Renal failure, neurologic changes, hemolysis, thrombotic microangiopathy, and low complement levels all suggested atypical hemolytic uremic syndrome. Eculizumab 900 mg was administered intravenously on hospital day 6 and continued weekly for four doses followed by maintenance therapy. She recovered neurologically and renally after the third dose, and hematologically by the sixth dose. Her recovery has been sustained on long-term eculizumab treatment. In severe atypical hemolytic uremic syndrome, eculizumab safely reverses neurologic impairment and eliminates the need for dialysis. The optimal duration of treatment with eculizumab remains to be determined.

    Author/Foundation: Maro Ohanian, Christian Cable, Kathleen Halka

    Year of publication: 2011, English

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  • A Parent's Perspective - aHUS BOOTCAMP

    You or your child have been diagnosed with Atypical HUS - Now What? Originally published online here: http://www.atypicalhus.org/page/a-parents-perspective-ahus

    Author/Foundation: Cheryl Biermann, Linda Burke, and Jodi Kayler

    Year of publication: 2010, English

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Atypical Hemolytic Uremic Syn. Articles

Most recent articles:

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A Parent's Perspective - aHUS BOOTCAMP

So, you or your child's symptoms have lead you to the doctor or straight to the hospital. Symptoms may have included extreme fatigue, puffiness, vomiting, paleness, fever, and perhaps some diar...

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NORD article on Atypical HUS

Atypical Hemolytic Uremic Syndrome

The National Organization for Rare Disorders (NORD) web site, its databases, and the contents thereof are copyrighted by NORD. No part of the NORD web s...

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aHUS, What is the Situation in 2011 (French language)

Le syndrome hémolytique et urémique (SHU), caractérisé par l’association d’une anémie hémolytique avec schizocytes, d’une thrombopé...

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Atypical Hemolytic Uremic Syn. Events

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  • October 2011

  • AIRG France Annual Meeting

    On 15 October 2011

    October 15, 2011 in Montpellier, Faculty of Medicine School of Medicine, 2 Rue 34000 Montpellier

    More info

  • AIRG Belgique: Journée Annuelle

    On 23 October 2011

    A vos agendas, notre prochaine journée annuelle est prévue le 23 octobre 2011 à Namur.

    More info

  • December 2011

  • International Day of Persons with Disabilities

    On 3 December 2011

    The annual observance of the International Day of Persons with Disabilities on 3 December was established by the International Year for Disabled Persons (1981). The Day aims to promote a better understanding of disability issues with a focus on the rights of persons with disabilities and gains to be derived from the integration of persons with disabilities in every aspect of the political, social, economic and cultural life of their communities. The goal of full and effective participation of persons with disabilities in society and development was established by the World Programme of Action concerning Disabled Persons, adopted by the United Nations General Assembly in 1982.

    More info

  • February 2012

  • RE (ACT) Congress

    From 28 February to 2 March 2012

    International Congress on Research of Rare and Orphan Diseases Basel, Switzerland

    More info

Atypical Hemolytic Uremic Syn. community news

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    Manifestation of atypical hemolytic uremic syndrome caused by novel mutations in MCP
    News, published 17 days ago

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    Abstract

    Atypical hemolytic uremic syndrome (aHUS) is a rare disease characterized by microangiopathic hemolytic anemia, thrombocytopenia, and acute renal failure. Mutations in genes encoding regulators of the...

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    Successful Simultaneous Liver-Kidney Transplant in an Adult With Atypical Hemolytic Uremic Syndrome Associated With a Mutation in Complement Factor H
    News, published about 1 month ago

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    Abstract only

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    Long-term renal function under plasma exchange in atypical hemolytic uremic syndrome
    News, published about 1 month ago

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    Full text article

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    Blood drive planned June 4 in Omak
    News, published about 1 month ago

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    Donations will benefit Chloe Peterson, 6, Omak. She suffers from Atypical Hemolytic Uremic Syndrome, which destroys her red blood cells. That clogs her kidneys, which could cause them to fail.

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    Pre-emptive Eculizumab and Plasmapheresis for Renal Transplant in Atypical Hemolytic Uremic Syndrome.
    News, published about 1 month ago

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    Summary: The case of a 12-year-old with a hybrid CFH/CFHL1 gene and atypical hemolytic uremic syndrome (aHUS) that had previously developed native kidney and then renal allograft loss is reported. This case illustrates the relatively common occurrence of renal loss from the late presentation of aHUS. Also presented is a protocol for the pre-emptive use of eculizumab...

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    Prophylactic eculizumab prior to kidney transplantation for atypical hemolytic uremic syndrome
    News, published about 1 month ago

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    We present the first case of a young patient with aHUS who received eculizumab as prophylactic treatment prior to a successful kidney transplantation....

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    Treatment with human complement factor H rapidly reverses renal complement deposition in factor H-deficient mice
    News, published about 1 month ago

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    Total deficiency of complement factor H (CFH) is associated with dense deposit disease (DDD) and atypical haemolytic uraemic syndrome (aHUS). CFH is the major regulator of the alternative pathway of complement activation and its complete deficiency results in uncontrolled C3 activation through this pathway and secondary C3 deficiency

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    Complement Activation During Hemodialysis in Atypical Hemolytic Uraemic Syndrome as Underlying Kidney Disease
    News, published 2 months ago

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    This study is currently recruiting participants

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    Family event raises $26K for research - Forsyth County News Online
    News, published 3 months ago

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    ...The third annual Hike 4 Hyde at the Sawnee Mountain Preserve raised more than $26,000 for charity in honor of Hyde Talbot and another young boy in Georgia with atypical hemolytic-uremic syndrome, known as Atypical HUS...

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    Battling a life-threatening disorder, with energy and a smile - WXIA-TV
    News, published 4 months ago

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    When he was just 18 months old, Hyde was diagnosed with atypical HUS. Roughly 300-400 people in America have it -- a genetic disease that attacks the red blood cells and eventually destroys the kidneys and the immune system...

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