Resources for School Nurses & 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.
Many school administrators, teachers, and school nurses send and post notices about student health and wellness. We encourage that those messages to include district reminders about safety of immuno-comprised children to be released at least 2 times a year, and additionally during times of local outbreaks of communicable diseases in the community. While delivery may vary (school handbooks, backpack mail, school websites, parent association Facebook pages etc), we suggest outlining practical guidelines to optimize that all need to be involved in creating a healthy learning environment.
Please check in with medical professionals for "best practice" guidelines, as well as with parents of students living with aHUS for added insight into matters such as nasal flu mist, GI illnesses, fever, sun protection, hydration, and other concerns.
(At a minimum students with atypical HUS will benefit from reduced viral/bacterial loads through simple provisions such as avoidance of shared classroom materials, but be aware that some aHUS patients will attend school with seizure issues or with central lines. See our Individualized Health Plan or IHP template for suggestions.)
aHUS Resources - School Nurses, Counselors, Teachers, and other School Staff
aHUS Bootcamp – an Overview of atypical HUS (included link to detailed medical info from the NIH)
www.aHUSSource.com – a informational site, provided by Alexion Pharmaceuticals (makers of the drug eculizumab)
Individual Health Plan info/template – a sample IHP, useful to share with parent/caregivers
Helping Parents Understand the P.E.T. Process - the basics about I.E.Ps, 504s, and IHPs
Video – a Global Genes webinar about school issues (general rare disease patient issues)
Video – Rare Disease Challenges, social/emotional impacts of a rare disease
Grab N Go Toolkit - Urgent Care Directives and Emergency Card. These forms list Physician Contact Info and Specialized Care Details, to carry or place on file.
aHUS Fact Sheets (brief) - Print & Share
aHUS Key Information and Facts - Detailed Information & Research
Other Information, Updates and Resources are available on the
aHUS Alliance website
and on Twitter at @aHUSallianceAct
As part of the Sept. 24th aHUS Awareness Day Campaign, the aHUS Alliance has created 2 fact sheets. One is a single page (double-sided) with information about atypical HUS as a disease, and the other is a longer version with additional information and source citations to research articles and medical journals.
Looking for detailed medical information?