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.

New Kind of Medical Alert Bracelet

Written by Linda Burke, published 2 months ago.

The more tradtionally-styled medic alert logo bracelets and necklaces with the usual pendants and dog tags have just gotten a tech update with the advent of USB devices stored right inside!

Since medical USB devices are small and portable, these specialty thumb or stick drives for computer access can be utilized to store a gigabyte or more of an aHUS patient's medical history, lab or test results, and other pertinent, health-related data. Most medical USB devices offer password protection against casual perusal by unauthorized personnel, safeguarding the confidentiality of the information.

Noted as being fully compatible with most Windows and Mac operating systems, the USB flash drive allows critical information to be obtainined by hospital or emergency personnel with a quick plug-and-play accessibility. It's reported that more than 90% of '1st Responders' such as EMTs are prepared to read a USB Medi-Chip Flash Drive in their vehicle*.

From innovative and functional items such as zipper pulls and watches http://www.medicalalertjewelry4u.com/medical-alert-jewelry , to cheerful and kid-friendly designs http://www.elegantmedicalalert.com/search.asp?keyword=usb&sortby=0&page=2&catid=, these medical USB devices can offer a sense of security that critical medical data always accompanies the aHUS patient it is designed to assist. A great overview on USB medical flash drives and their use is available at http://medicsalertbracelets.com/medical-usb-devices/

Our thanks to Mireya for mentioning her son's USB drive in her blog on www.atypicalhus.org , it was a wonderful idea for me to research for our aHUS patients and their families!

* Source: http://www.medicalalertjewelry4u.com/medical-alert-jewelry
+ Source: http://medicsalertbracelets.com/medical-usb-devices/

Written by Linda Burke, published 2 months ago.

Patient groups

  • Foun. Children with aHUS

  • AIRG

Atypical Hemolytic Uremic Syn. Recent Activity

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    congress
    topic, published 1 day 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 5 days 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 7 days 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 14 days 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 ...

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    AHCF NEWSLETTER Alternating Hemiplegia of Childhood Foundation SPRING 2011 Volume 20, No. 1
    document, published 21 days ago

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    3rd International Conference Program HUS & MPGN & related diseases
    document, published 21 days ago

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    Current diagnosis and therapy of hemolytic uremic syndrome (HUS) membranoproliferative glomerulonephritis (MPGN) and related diseases

    Program includes poster descriptions.

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    Complement Activation During Hemodialysis in Atypical Hemolytic Uraemic Syndrome as Underlying Ki...
    news, published 21 days ago

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    This study is currently recruiting participants

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    Eculizumab and Transplant
    topic, published 28 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 28 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 28 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...