The Atypical HUS Foundation

SUMMARY - SCHOOL Resource List

Education and the aHUS Patient

School age children with a rare disease should have an I.H.P. in place, with an I.E.P and a 504 plan in effect at their school.   Confusing?  Finally, some plain talk about educational jargon and programs – complete with helpful links and resources!  Sift through the terminology and learn effective ways to help children challenged by a rare disease diagnosis – allowing them to maximize their school experience.  Find out how to initiate ACTION, and become part of your child’s Pupil Evaluation Team.

Are you a rare disease patient enrolled college or involved with learning opportunities provided by your workplace?  Adults with a chronic illness often deal with learning disabilities that can affect workplace issues, so read on to discover education issues and check out how the links here can provide a starting point to explore complexities that affect adult rare disease patients.

Education and the Rare Disease Patient

Special version of the above, written in more general terms for the any student challenged by a rare disease diagnosis.

 

 

 

Creating an Individual Health Plan in the School Setting

 

An IHP or Individual Health Plan is an extremely useful tool for individuals with special health issues, allowing a formal and organized format for school personnel to help maintain a healthy learning environment.

For an overview of aHUS and Education, click HERE .

 

Here are guidelines, suggestions, and a sample IHP (Individual Health Plan) for an elementary school age child diagnosed with a rare disease.  To better illustrate the type of wording found in an actual IHP, this sample format represents what might be in an IHP for the rare atypical hemolytic uremic syndrome or aHUS.  Helpful tips for constructing an IHP for any student with a rare disease diagnosis are marked in green.  

Click HERE to Learn More- See a Sample IHP, with tips on how to CREATE YOUR OWN IHP draft to collaborate with school officials

 

Resources for School Nurses & School Staff

     Atypical HUS presents very differently in patients with this rare disease.  Initially your main consideration in a student’s academic success is communication between home and school regarding the needs of aHUS patients who are attending classes at any grade level within a public or private school setting.  

     Communicating information about atypical HUS as a disease, explaining the student’s health status and needs, and meeting as a P.E.T. to determine needed accommodations can make a huge difference in not only optimizing success but also in providing a safe and comfortable school experience for children with atypical HUS.  

     We've compiled a list of resources for school nurses to share with staff and with parents, in addition to basic information about this rare disease.

   

  

Overview of Education and the Rare Disease Patients and a Sample Individualized Health Plan by Linda Burke, M.S.Ed.

A Public Service provided by www.atypicalhus.org. Questions?  Contact 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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