The Atypical HUS Foundation

APPs for Patients and Caregivers

     Patients, caregivers, and family members face many challenges in the face of a rare disease diagnosis or an ongoing chronic illness.  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 culled some great apps and ask you to become an "Apps Advocate" by letting us know YOUR FAVORITE APP, with an end goal of creating an online resource list for patients (with their caregivers and family) challenged with chronic illness or rare disease issues.    These apps can help you organize and manage treatment schedules, medical appointments, drug lists, nutrition planning, caregiver coordination, and MORE.

   

     More apps roll out each month, so if you find a wonderful resource for those challenged by a rare disease or chronic illness, be an advocate and suggest apps that have real value for patients, families, and caregivers.  Help yourself- Help others!  It's a great way to get involved with rare disease advocacy efforts.  (Find an app you feel we should post as a resource? Please email Linda@atypicalhus.org with the apps details and a link.)

 

Note:  The Atypical HUSFoundation does not endorse any products, good or services.  Any mention of such is strictly for informational purposes, without benefit to individuals or our organization, and any perceived  value should be reviewed objectively by our readers.

 

This page of Patients and Caregivers contains information gathered, or modified slightly, from app descriptions posted online.

MyMedSchedule (Mobile Version for Android and iPhone)                                      http://www.mymedschedule.com/

Compatible with: Android, iPhone, iPad, and iPod touch. Requires iOS 4.2 or later.              Cost:  FREE

Mobile App at http://mymedschedule.com/home/about_mms_mobile.asp

Patients and caregivers can use the MyMedSchedule app to manage meds and labs on the go, set reminders, and make it easier to communicate with their healthcare providers.  This app can track medications and appointments, and be used to create schedules to both read and print (in English or Spanish).  It includes My Health Tracker to let patients or caregivers record lab results and vital signs.

 

Care After Kidney Transplant -    http://www.kidney.org/apps/app_KidneyTxCare.cfm

Compatible with:  iPhone, iPad, and iPod Touch  (Requires iOS 5.0 or later)      Cost:  FREE

They State: “This App for patients was created as a convenient way to learn how to stay healthy with a kidney transplant.”  It has FAQs about post-transplant care, issues, and common concerns.

 

RENAL TRKRR             http://www.mobilehealthglobal.com/catalogue/apps/106/renal-trkrr

Compatible with:  iOS iPhone, iPad, and Android devices (smartphones, tablets)      Cost:  $7.99

They State: “RENAL TRKRR provides information and tools to allow patients with chronic kidney disease to manage their illness by tracking their food intake, their medication, their lab results”, and more.  Their Nutrition TRKRR component “shows the levels of potassium, phosphorous, protein, sodium, carbohydrate, and water consumed throughout the day” and there is also a Medication Trkrr section to this app.

 

KidneyDiet                                                                                 http://www.kidneydiet.com

Compatible with:  iPhone, iPad, Kindle and Android (smartphones, tablets etc)   Cost:  $1.99 (Amazon)

Need to watch the 3Ps – Phosporus, Potassium, Protein? This app helps people with kidney disease make better decisions about their diet. If you are facing Chronic Kidney Disease (CKD) or End Stage Renal Disease (ESRD), becoming aware of the sodium, protein, phosphorus, and potassium in your diet is key.  (For each app sold, a portion is donated to the George Lopez Foundation’s mission to help children with kidney disease.)

 

iDialysis                           https://play.google.com/store/apps/details?id=com.nadcom.iDialysis&hl=en

Compatible with:  Requires Android 1.6 and up                                 Cost:  FREE

 

iDialysis is a mobile application for patient who are using dialysis machines.

The application able to record your blood pressure when using the dialysis machine, records patient weight during treatment, and records a post- treatment notes.  That information can be viewed in either tabular format or line and bar charts.

ICE:  In Case of Emergency

https://play.google.com/store/apps/details?id=com.appventive.ice

Compatible with:  Android 2.2 and up                                                                             Cost:  $3.99

The ICE: In Case of Emergency App stores important information for first responders and hospital staff to use in case of an emergency involving you, to include:  calling your emergency contacts (can call within the app), doctor’s names and numbers (can call within the app), medications, flexibility to add special instructions and more.  Choose to use the ICE widget to your system lock screen, or optionally share some or all family info with ICE within their additional “Family Info” category Multiple languages to include Spanish, French, German, Japanese, Hebrew, and more.  Optionally choose to email selected information (e.g., to your doctor) or also use the (FREE) web version of Family Medical Info (FMI) to create & edit profiles on your computer.

 

 

ICE

https://itunes.apple.com/us/app/ice/id284936201?mt=8

Compatible with:  Requires iOS 4.2 or later. Compatible with iPhone, iPad, and iPod touch     Cost:  $0.99

This emergency contact list not only allows emergency personnel a quick and easy way of finding out exactly who you would like to be contacted, but this ICE app also provides a central place for you to record  medications and other vital information related to your medical condition.

Lists of the most common allergies and medical conditions as well as hundreds of medications are provided to make setup quick and easy, or you can add addditional categories and options to customize your app to your specific condition or needs.

 

KidneyAPPetite                 https://itunes.apple.com/us/app/kidneyappetite/id749043892?ls=1&mt=8

Compatible with: iPhone, iPad, and iPod touch. Requires iOS 6.0 or later.              Cost:  FREE

Kidney APPetite helps patients track, manage and adjust their daily nutrient intake to achieve their nutrition goals.  Whether you are the patient or a caregiver for someone living with chronic kidney disease (CKD) on dialysis, this app will help you work withyour renal care team to set personal guidelines for getting the right amount of nutrients from the foods you eat, along with fluid intake. (American Kidney Fund with Sanofi)

 

Care Zone                                                                                           http://app.lk/carezone

Compatible with:  iPhone, iPad and Android (smartphones, tablets etc)   Cost:  FREE

Features include a shareable journal, which includes ability to log observations and upload photos to keep caregivers and family informed, shareable task-list to help you keep on track, and some medication tracking. A unique feature is the apps ability to offer a “CareZone broadcast” that allows you to “send a recorded voice message to up to 100 recipients.”

 

 

CaringBridge App

Compatible with:  iPhone, iPad and Android (smartphones, tablets etc)          Cost:  FREE

Android:  Requires  Android 2.3.3 and up  https://play.google.com/store/apps/details?id=com.caringbridge.app

Compatible with iPhone, iPad, and iPod touch. Requires iOS 7.0 or later. This app is optimized for iPhone 5.  https://itunes.apple.com/us/app/caringbridge/id365726944?mt=8

This app is offered by the CaringBridge website, committed to bringing friends and family together during any form of health journey.  Their non-profit offers a free webpage where people in time of need can share updates, photos and videos to connect with friends and family who care and want to help.  The Android app has a new personal fundraising option.

 

 

Unfrazzle                                                     http://unfrazzledcare.com/unfrazzle-app/

App: https://itunes.apple.com/us/app/unfrazzle/id638456145?ls=1&mt=8  Cost:  FREE

Compatible with: iPhone, iPad, and iPod touch.  Requires iOP 4.3 or later.  Possible Android?

Unfrazzle is a time and activity management app that helps caregivers remember and track the full range of their caregiving tasks, and stay in-sync with other caregivers.  This app lets tech-savvy people customize and keep tabs on several care categories at one time with unprecedented flexibility. Bonus: This app is available in multiple languages: English, German, Northern Sami, and Spanish.

WE Need Your INPUT and assistance in finding more apps to help our patients, families, and caregivers.  Please send YOUR app suggestions to Linda@atypicalhus.org and be a rare advocate!

 

 

 

 

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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