The Atypical HUS Foundation

Medic Alert Jewelry goes High Tech with USB Drive

     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 , to cheerful and kid-friendly designs like this Minion USB Necklace these medical USB devices can offer a sense of security that critical medical data always accompanies the aHUS patient it is designed to assist.  Here's an article on this topic, with a realistic patient viewpoint on why they chose aUSB medical flash drive type of medical alert bracelet. and their use is available at

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

Leather USB Alert Bracelet

Leather USB Alert Bracelet

Leather Heart Bracelet shown, available at:

Note:  The Foundation for Children with Atypical HUS does not endorse, nor benefit from, the purchase of any USB medical flash products or vendors.

Check these out, download & print:

Emergency Care Card - A specialized Emergency Card for aHUS patients and their medical needs.  Who speaks for the aHUS patient when accident or injury occurs?  Don't leave anything to chance, make certain that your wallet, gym bag, backpack or laptop case contains the Emergency Care Card.

A smaller format, easily portable version of the Urgent Care Directives bifold below, this emergency card outlines your specialized care, contact information for your personal emergency contacts, and contact information for the Patient's Medical Team.

When patients can't speak for themselves, and the caregiver is not immediately available, the Emergency Care Card steps in to fill the information void by providing vital information necessary for emergency treatment that is rapid and appropriate for aHUS patient needs.

NOTE to Parents of pediatric patients: This card fits easily within a clear plastic card badge holder, which can be clipped to the child's car seat frame to provide peace of mind when traveling by car. 

Download the Emergency Care Card by clicking here.


Urgent Care Directives -  Be proactive!  Fill in our Urgent Care Directives bifold with vital information concerning your medical needs.  This simple form is great to provide your employer or your child's nurse, outlining actions needed for first responders in case of medical emergencies.

A multi-purpose tool, it's perfect to take with you when traveling away from home. The Urgent Care Directives form states your rare disease diagnosis, provides details regarding specialized care necessary, and offers contact information for your specialists and Primary Care Physician.  Atypical HUS families can feel more secure when their loved one must present at an 'away care' clinic or ER for urgent care, knowing that the treating medical emergency team is can begin their response with more robust medical information.

NOTE:  The Urgent Care Directives bifold is also handy to provide to physicians 'covering' for your regular doctor over the weekend or during times when your regular doctor is at conferences or on vacation.

 Download the Urgent Care Directives tool by clicking here.


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Comment by Cheryl Biermann on April 9, 2011 at 1:08am
 Wow, fast work on that info. Linda!  When I mentioned such a thing is possible at the hospital today, the nurses were so excited about the possibility and opportunity to better serve patients...I think I'll go check out those zipper pulls for Nathan-(he'll likely loose anything that isn't tied down!)


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Membership is open to patients, family, friends, caregivers research and medical personnel.


The Atypical HUS Foundation encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.

Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.

Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "aHUS Bootcamp" and "About aHUS" tabs at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.


NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.


Did you know...

CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
• • • • • • • • • • • •
It is estimated that there are about 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
more factoids...

Help us fight the battle

Your donation of $295.for an aHUS pearl bracelet will directly fund research to help aHUSpatient and their families. Each bracelet has an appraised value of $925, and is offered with your gift of $295. Note:  For shipping outside the USA, please add $25. to cover international shipping costs.

(Note: Bracelets do not qualify as tax deductible donations under IRS regulations.)

Normally, aHUS pearl bracelets to be made-to-order and as such expect a 4 to 6 week window before your custom bracelet is shipped.  In a rush?  Contact with your request and details.


 Donations of a specific dollar amount are welcome-every dollar will help aHUS research efforts supported by The Atypical HUS Foundation at

Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Atypical HUS Foundation may be mailed to:

The Atypical HUS Foundation
C/O Deborah Lewis
PO Box 333
Barnhart, MO 63012

For pearl bracelet orders, please allow extra time for processing checks. Questions about aHUS donations? Please email



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