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.

Another Tuesday

Written by marisaboule15, published 2 months ago.

Tomorrow, Tuesday, Constance will receive a dose of Soliris, it is a big day!

Written by marisaboule15, published 2 months ago.

Patient groups

  • Foun. Children with aHUS

  • AIRG

Atypical Hemolytic Uremic Syn. Recent Activity

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    Getting information on aHUS
    topic, published 7 days ago

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    The National Institutes of Health have Genetic and Rare Disease (GARD) Information specialists that may be able to help you find information.

    The GARD Information Center does not provide genetic counseling and does not offer diagnostic testing, referrals, medical treatment or advice.

    Ther...

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    Video on PNH with mention of access to Eculizumab in Portugal...
    topic, published 16 days ago

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    http://vimeo.com/26026976

    "This rare hemolytic anemia is treated with an orphan drug, Eculizumab, which improves the patients’ quality of life. This drug, for which the reimbursement still hasn’t been defined, costs per year and per patient more than 250 000 euros. There are presently patients...

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    Videos of Newcastle Conference online now
    topic, published 17 days ago

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    Some great presentations: http://ahus.org.uk/

    also check out the EURORDIS article on the conference:
    http://www.eurordis.org/content/ahus-groundbreaking-uk-event

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    Best option for a transplant?
    topic, published 18 days ago

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    Hi all,

    Here's a brief summary of my medical condition:

    - Diagnosed with aHUS in July 1997 following vaccination
    - Immediately put on hemodialysis
    - Transplant in November 1998 - mother donated
    - Recurrent HUS after 11 days
    - Back on dialysis
    - On PD for 6 years
    - Currently on daily ...

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    Access to Eculizumab in Scotland
    topic, published 23 days ago

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    From the PNH Alliance: http://www.pnh-alliance.org.uk/articles

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    Co-morbidities of long term kidney disease catching up with me
    topic, published about 1 month ago

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    I have been on dialysis for 14 years now. 14 years! Gosh, that's long! I was diagnosed with aHUS in July 1997.

    A few months back, I started noticing my skin become increasingly brittle, prone to cuts. I also started getting blisters on my hands and feet. I showed this to my nephrologist who as...

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    congress
    topic, published about 1 month ago

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    Hemos estado en Newcastle y hemos participado contando como Jose tras sufrir ahus y perder los dos riñones ha recibido despues de 4 años un riñon con Eculizumab. Estamos muy contentos de haber asistido a este encuentro y haber podido entablar conversaciones con los doctores y con las familias.Ha ...

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    Patient Conference Newcastle
    topic, published about 1 month ago

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    I have just arrived home for the patient conference in Newcastle. I have had ahus for 3 years now and always felt very isolated as no-one else knew very much about the illness. for the first time I do not feel alone with this. I have been receiving Eculizumab now for approx 18months and have seen...

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    newcastle
    topic, published about 1 month ago

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    We have been in Newcastle and we have participated by telling how Jose, after suffering from aHUS and losing both of his kidneys, four years later he received a kidney with Eculizumab. We are very happy to have attended this gathering and to have been able to have conversations with the doctors ...

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    Eculizumab safely reverses neurologic impairment and eliminates need for dialysis in severe atypi...
    document, published about 1 month ago

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    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 ...