The Atypical HUS Foundation

Adult aHUS Resources

Information and Resources

Regarding ADULT aHUS Patients

 Over the past couple of years, new information about atypical HUS has been slowly filtering from the research and clinical arenas into journal article and research papers available to patients and their families.  Along with this new information has come the need to dispel commonly held information that now needs to be updated to reflect current medical fact.

*  Adults can be diagnosed with atypical HUS.

*  aHUS affects not only the kidneys, but damage can also occur in other vital organs such as the heart and brain.

*  Since aHUS is in the patient's genes, indivduals need to recognize that aHUS is an ongoing concern to be followed in their medical care plan.

*  Doctors do not need to identify a genetic mutation to begin treating an aHUS patients.

     While our name may be The Foundation for Children with Atypical HUS, we recognize there is an adult population of atypical HUS patients that is large and that faces special challenges.  Adults face workplace issues, childcare concerns, and family dynamics in addition to the usual rigors of treatment that are shared across all ages and demographics.  When the family's income, insurance, and head-of-household duties are in disarray due to the illness of a mother, father, or spouse - the entire family unit faces major issues.  Who advocates for the adult aHUS patient when illness strikes?

     To emphasize the special needs and concerns of the aHUS community, this tab provides information specific to adult aHUS patients. 

 

 

Adults with aHUS - Interactive FORUM

Looking for information about the special challenges facing adults with atypical HUS?  Want to share your story, vent about issues, or ask the opinion of another adult aHUS patient?  We invite our adult aHUS patients to share their journey and their insights at a special gathering spot, our Forum 'Adults with aHUS' viewable at  http://atypicalhus.ning.com/forum/topics/adults-with-ahus .  Meet other aHUS patients age 18 years and older to share information and support.  We welcome your participation - please add your voice!

 

 

Doc to Doc Directory

Physician Outreach to Medical Personnel with Interests regarding the Treatment of ADULT aHUS Patients

 

We deeply appreciate the generosity of the physicians committed to aHUS outreach efforts, who have graciously volunteered to share their aHUS expertise and experiences. We extend a warm welcome to all physicians or researchers with aHUS case experiences; doctors wishing to add their contact information to this 'Doc to Doc' registry may contact linda@atypicalhus.org

View physician contact info at  our adult-oriented  DOC to DOC DIRECTORY

 
 

 

 

Dispelling Common Myths in aHUS – an article By Dr. Robert Kaplan

     This information was derived from a component of  Dr. Kaplan's  formal  slide  lecture entitled "Dispelling Common Myths in aHUS" presented at The Western Pennsylvania-Allegheny Health System (WPAHS) in  Pittsburgh, PA, 02/20/2013,  as part of the weekly Core Curriculum Conference within  the health system's  hematology-oncology  fellowship program. The target audience included hematology-oncology fellows as well as key faculty members of  the Division of Hematology and Cellular Therapy.

     Dr Kaplan is a key faculty member within the Division of Hematology and Cellular Therapy of The Western Pennsylvania-Allegheny Health System and a member of Alexion's aHUS Speaker's Bureau.

Read information presented by Dr. Kaplan at  aHUS Myths versus FACTS

 

 

These articles written by adult aHUS patients and family members illustrate the challenges of living with the diagnosis of an ultra-rare disease.  Through sharing their journey, we gain a better understanding about the ripple effect aHUS issues can cause throughout family dynamics, personal relationships, and workplace issues.

 

Ever wonder about the issues facing pediatric aHUS patients as they become 18 years old and transition into adult treatment settings? Donna Kolp details her family's experiences as her son Jonathan graduates high school and moves into adulthood, focusing on the issues that parent and child encounter as decision-making and advocacy shift and a new care team of adult-oriented physicians and medical personnel replace the familiar pediatric care team.

Follow their journey .... Read the Kolp's Story

 

Kamal D. Shah of India shares his aHUS journey from initial diagnosis as a Chemical Engineering student headed to graduate school in the US to a kidney transplant ruined by a recurrance of aHUS.  Now on home hemodialysis, Kamal takes action and and becomes a co-founder of  NephroPlus - a chain of innovative, patient-centric dialysis centers in India.  A moving story of facing the challenges of longterm dialysis with vision and hope.... Read Kamal's Story 

 

Adult aHUS patient Jill knows firsthand the hopeless feelings and the hardships facing those diagnosed with this disease.  As a mother and dialysis-to-transplant patient, Jill encourages other adults facing challenges to stay strong and to find their own sources of inspiration and strength.  A story of faith and family, Jill’s determination lead her to focus on the positive:  “If you want to see a rainbow, you gotta put up with the rain.”   For frank and heartfelt commentary about emotional impact of chronic illness ... Read Jill's Story

 

A Brother's Tale:

 Atypical HUS doesn't just impact the patient's physical health.  A diagnosis of aHUS creates personal and family concerns that range far beyond hospital walls and medical settings.  A caring brother offers his views on how their entire family made adjustments and offered support to Alyssa as her aHUS journey progressed from pondering college plans while on dialysis to becoming a transplant patient moving into her first apartment.  For more about a life transformed, ....Read the Deffenbaugh's Story 

 

 

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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