The Atypical HUS Foundation

Grab N Go Tool Kit

The Grab N Go Tool Kit is comprised of four helpful resources to assist  patients, family members, caregivers, and all who face the challenges of a chronic illness or rare disease.  Included is an 'Apps Page' to assist with organizing medications, appointments, caregiving tasks, and MORE!

 

 

 

 

TOOLS to Make Life Easier

for Rare Disease Patients and their Caregivers !

*or anyone challenged by a chronic illness

 

 

LabTracker

 

LabTracker   Track lab trends to monitor patient health.  A handy trifold for patients or caregivers to keep with them, the LabTracker provides an organized format to record your lab results and other important health data.  Available at aHUS meetings in printed format, or download the pdf of our 'printer friendly' LabTracker online. 

 

Download the LabTracker by clicking here.

 

Need extra data grids to record your labs?  Download the LabTracker Supplementary Sheet by clicking here.

 

 

Patient Self-Advocacy Tool 

 

Patient Self-Advocacy Tool  Take charge of your health!  Our Patient Self-Advocacy Tool provides an organized format to list concerns, issues, and questions that arise at home between visits to your health professionals.  Great for adult patients or those caring for a patient with chronic illness, this trifold is ideal to fill in at home and bring to your next visit to the clinic, hospital, or doctor.  Start your next medical conversation as an informed advocate for yourself or a loved one - focus discussion on key medical issues and get the most out of your appointments!

Download the Self-Advocacy Tool by clicking here.

Urgent Care Directives 

 

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.
 

 

Emergency Care Card

 

Emergency Care Card 

A specialized Emergency Card just 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, backpack or laptop case contains the Emergency Care Card.

A smaller format, easily portable version of the Urgent Care Directives bifold, 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.

Apps Page

Though not a formal asset in our Grab N Go Toolkit, get organized 'on the go' with apps for your smartphone and other devices!

      Patients, caregivers, and family members face many challenges in the face of a rare disease diagnosis.  Sometimes it can feel like a triple whammy – the diagnosis of serious illness, difficulty finding information about a rare disease, and the impact of treatment, schedules, and emotional stress on the entire family. Wouldn’t it be nice to find some applications for smartphones, tablets, and other devices that would make life easier for everyone?  

     We’ve combed the web to create an online resource list for patients (with their caregivers and family) challenged with chronic disease issues, ESRD, CKD, transplant concerns, dialysis, treatment schedules, medical appointments, drug lists, nutrition planning, caregiver coordination, and MORE.  Organize medical information and care, or use these apps to coordinate tasks and to share information among your support circle.

Click here to check out our FAVORITE Apps

 

*Find an great app?  Please email Linda@atypicalhus.org with the app's details and a link.

 

 

  

Interested in receiving permission to adapt items in the Grab N Go Toolkit for your rare disease organization or patient advocacy non-profit?  Please contact the Grab N Go Toolkit creator, linda@atypicalhus.org.

IN REGARD TO MEMBERSHIP REQUESTS

To ensure proper processing of your membership, please make sure to set your email filters to accept emails, from info@atypicalhus.org.

The Atypical HUS Foundation is an all-volunteer organization. Please allow at least 72 hours for an email response confirming your membership request.  If you do not receive an email, please check your spam folder or email directly to info@atypicalhus.org

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

WELCOME - JOIN US!

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.


NEW 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.

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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 info@atypicalhus.org 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 www.atypicalhus.org.


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 info@atypicalhus.org

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