The Atypical HUS Foundation

Adult Patients - CONNECT

 

Connect with other aHUS adult patients in our Forum 'Adults with aHUS'.

 

Meet others who face the same challenges, share your viewpoints, and gain support!

 

 

CLICK HERE to Connect

 

 

 

 

 

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 dymanics 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, we'd like to invite our adult aHUS patients to share their journey at a special gathering spot, this new "Adults with aHUS" Forum, where you can meet other aHUS patients age 18 years and older to share information and support.  We welcome your participation - please add your voice!

 

(Note:  Unfortunately, our website's Ning Network platform has no mechanism to allow the most current posts to appear first in a Forum.  Please start on the Forum's last page for most recent updates and comments.)

 

 

Badge

Loading…

© 2018   Created by Deborah Lewis.   Powered by

Badges  |  Report an Issue  |  Terms of Service