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.

aHUS Soaring Voices Videos

Written by aHUS patient advocates, published 4 months ago.

Our daughter Lou-Anne has been affected since 10 months old with aHUS of the C3 mutation. This video traces her life from birth to the kidney transplant made possible by a U.S. treatment.

You'll never walk alone with aHUS. I put together this mini video to show that you are not alone just because you have a rare disease. It also shows the links if you want to get in touch with with relevant patients, medical professional's etc...The symbol of the butterfly I used is to represent life and freedom.   

 

Christian's lifelong battle with Atypical HUS   

Rare Disease Day 2012 - Benjamin Aguallo. Video of Benjamin Aguallo as he deals with atypical HUS.
 

Soaring Voices Ash's story. Ashley was diagnosed with Atypical Hemolytic Uremic Syndrome in January 2009. At the time we didnt know if he would live to see his 1st birthday.... he is now 3!!! We are hoping to create awareness of the struggles of people with a rare disease because the more that people know about them the less they will fear them and therefore join us in our fight because together we are strong and not alone!!!

 
A rare one - Rare disease day - feb 29th 2012. Rare Disease Day, ASHUA Asociación Sindrome Hemolitico Uremico Atipico España (ashua.spain@gmail.com - (+34) 667 766 179 - Facebook: Ahus España Ashua)
 
Christopher's story with aHUS. Despite being born 8 weeks early, Christopher was a healthy growing child. At the age of 6 his became very ill and was diagnosed with Atypical HUS. Since his initial diagnoses he suffered one relapse. We are fortunate to have just celebrated 2 years of remission and his 9th birthday.
 
A Rare One. Tricky Britches plays their song "A Rare One" at Local Sprouts in Portland, Maine in support of international Rare Disease Day.

Feel free to download the lyrics from the links below:

English - http://alphamarketing.com/ahus/rarediseaseblog/english.html
Spanish http://alphamarketing.com/ahus/rarediseaseblog/spanish.html
French - http://alphamarketing.com/ahus/rarediseaseblog/french.html

Download the song - http://www.cdbaby.com/trickybritches12

Download the instrumental - http://www.cdbaby.com/trickybritches13

Written by aHUS patient advocates, published 4 months ago.

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Atypical Hemolytic Uremic Syn. Recent Activity

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    Passing on the Torch
    topic, published about 1 month ago

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    Crazy March Madness here in Missouri again. :) Baseball started with a new team, kindergarten testing coming up and someone "forgot" to give us the permission to join the Jr. National Honor Society, (anyone want to bet he didn't want to stay after school any more?), not to mention this wonderfu...

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    PROGRESS IN MAKING ECULIZUMAB AVAILABLE IN EUROPE
    topic, published 3 months ago

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    It is now some three months since the EMA gave a positive approval to Soliris for use in the treatment of aHUS in Europe.

    In the forum about the aHUS Patients Support Group I have explained the position in the UK, and in particular England, for deploying the use of eculizumab .

    But what is...

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    UK PATIENTS AND FAMILIES SUPPORT GROUP
    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.

    It must say something, either about the global nature of aHUS ,or the slowness of the UK to catch on, that earlier postings about th...

  • -

    split in liver
    topic, published 3 months ago

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    I need your help. There is a little girl using Eculizumag and her kidney is fine 100% doctors has decided to put in a piece of liver. Anybody has this option in ahus ??? i do not know articles about this

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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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    Merry Christmas
    topic, published 5 months ago

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    Many of our population often come down with something this time of year and are stressed about not being at home when there is such an effort on everyone's part to make memories and spend time with loved ones. So my proposal is everyone offer a little prayer and send your thoughts heavenward tha...

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    Journal Club: Blocking complement prevents antibody mediated rejection in positive crossmatch liv...
    topic, published 6 months ago

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    Blog post by Dr.Vinay Nair, Mt Sinai NYC, Transplant Division

    http://www.nephronpower.com/2011/11/journal-club-blocking-complement.html

    Refers to this recently published article:
    http://www.ncbi.nlm.nih.gov/pubmed/21942930

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    AIRG France's Annual Day
    topic, published 8 months ago

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    AIRG is the French Association for Genetic Renal Diseases. They are hosting their annual information day in Montpellier, France on October 15th.

    Program can be found here:
    http://www.airg-france.fr/wp-content/uploads/2011/09/PROGRAMME-de-la-journ%C3%A9e-annuelle-2011.pdf

    Nicolas, you going...

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    Nice interview with Prof Loirat...
    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