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.

Story

Written by Mireya, published 3 months ago.

aHUS story published

Ever since Jose contracted aHUS and spent 4 years on hemodialysis, I had time to think over and change my lifestyle. Unwillingly, I started doing what always had been in second place, writing and listening. During those 4 years, I met many people and learned about their stories. One day I signed up for a literary contest at the Hospital, and did the same the following year, and I did so for 4 years and finally this year I got an award and the Jose's story has been published in a book along with other winners. The memory of the atypical HUS disease has now been recorded into a story told by a family experiences........ I encourage you to write your own stories.

Written by Mireya, published 3 months ago.

2 comments for «Story»

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  • cherylbiermann
    cherylbiermann | published 3 months ago | Originally written in English

    What a wonderful opportunity that the hospital provided to you! Is it a publication for the hospital or is it released to the general public? My best writing is on this subject, write what you know is the advice writers always give right? I encourage everyone also, it is very healing! Congratulations, Mireya!

  • Mireya
    Mireya | published 3 months ago | Originally written in English

    Thanks Cheryl .. A journalist called me to ask some questions about aHUS disease. I have write about ahus in PNH magazine too !!!
    We need to follow with this rare disease because our children are younger!!!

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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...

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    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