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.

Update on Lou-Anne

Written by nmullier, published 26 days ago.

We are awaiting the Soliris and transplantation ...

Our hospital, will most certainly support the Soliris treatment for Lou-Anne until she can receive a transplant. The protocol is being drafted. With any luck we should cancel our summer vacation.

It is true that the conditions are excellent for transplantation.

We are excited but also very anxious ... Today peritoneal dialysis works perfectly. A routine since 2006. But tomorrow? Transplant? Treatment? Treatments ...? What a change!

Talk to you soon,
Nicolas

Written by nmullier, published 26 days ago.

Patient groups

  • Foun. Children with aHUS

  • AIRG

Atypical Hemolytic Uremic Syn. Recent Activity

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    Eculizumab and Transplant
    topic, published 3 days ago

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    New article presents the first case of a young patient with aHUS who received eculizumab as prophylactic treatment prior to a successful kidney transplantation: http://www.springerlink.com/content/q176pm6061711845/

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    Getting to Know You- Patient Details
    topic, published 4 days ago

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    I've enjoyed reading many posts and look forward to hearing more about your family's journey with aHUS. It would be wonderful if each member online would post a profile outlining details that would help us all relate to and understand each other's interest areas regarding aHUS.

    Suggested deta...

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    Welcome
    topic, published 4 days ago

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    Thank you for joining us.
    There were a few months where we thought we were alone in the world. Today, it is no longer the case. This site will allow us to form a group, a small family, and together we will fight this disease.
    The more we are, the more our actions will be heard. There is still s...

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    A secondary effect
    topic, published 10 days ago

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    Good morning,
    I have noticed that 48 hours after Soliris is administered to my son, he starts suffering from headaches, which are not very severe, but he must be given parazetamol. I have also noticed that he is more active, faster, but happy.

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    Pour Mireya
    topic, published 10 days ago

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    J ' ai bien recu votre message , mais je ne comprend pas tout ! Je ne pratique pas l ' espagnole donc pourriez vous me l ' ecrire en francais ?

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    Soliris Side Effects
    topic, published 14 days ago

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    I would like to know the side effect of Soliris. After Jose gets his dose every 15 days, he becomes hyperactive, very talkative, jumps, and goes very quickly . He is hyperactive like this for a couple of days and then he calms and he is the normal child. Sometimes, he has a little headache .

    ...

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    Upcoming Conferences
    topic, published 30 days ago

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    Hey,

    I was just wondering if anyone is planning on attending the upcoming conference in Innsbruck in May? We are trying to get a patient program included in the conference schedule.

    Also, will anyone be attending the patient and family meeting organized by Dr. Goodship in Newcastle? I will ...

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    How many children take Eculizumab in Spain??
    topic, published about 1 month ago

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    For aHUS, I only know the parents of the Fundación Americana and the ones that have been added recently on this site.

    What can we do to have a larger community and get to know each other? It's very difficult for a mother not to be able to speak of this sickness to somebody close by. I conside...

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    New Website for Searching for Clinical Trials
    topic, published 2 months ago

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    The EU Clinical Trials Register (https://www.clinicaltrialsregister.eu) was launched yesterday by the European Medicines Agency. The online register gives for the first time public access to information on interventional clinical trials for medicines authorised in the 27 EU Member States and Icel...

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    Interested in a USA conference for aHUS families ?
    topic, published 2 months ago

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    We welcome the proposed opportunity for aHUS patients, parents, and aHUS physicians/researchers to meet at the University of Iowa. The University of Iowa has a highly accredited lab with expertise in aHUS genetic screening, and they successfully pioneered the first American aHUS renal transplant...