Atypical HUS 1.0

 

 

Atypical HUS:  Quick-Start Info & Resources

 

Patients, caregivers, and family members face many challenges in the face of a rare disease diagnosis like atypical HUS (aHUS).  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.  Providing resources to aHUS patients and groups around the world, the aHUS Alliance offers this compiled list of information and resources as initial steps to ‘aHUS Quick Start’ your journey to learn more about atypical HUS.

If you or a loved one have been diagnosed with the very rare disease atypical hemolytic uremic syndrome, you may have faced the hurdles at initial diagnosis by  feeling alone, confused, and at a loss for what to do next. Getting informed as well as getting connected to resources and support are normal first steps for patients and their families – but that’s more difficult to do to do with a disease unfamiliar to the public and to most physicians.  

Atypical HUS patients and advocates from multiple nations, under the umbrella group the aHUS Alliance, have joined together to create informational materials and resources which help provide accurate and up-to-date materials for families. With resources listed below to use as an initial starting point to guide your quest for information about atypical HUS, this aHUS Alliance ‘quick start’ which will help you to be proactive, rather than reactive.

People of all ages can be diagnosed with atypical HUS, and its symptoms can range greatly in severity and the aHUS impact on different parts of the body and its functions.  There is no ‘common’ set of Some atypical HUS symptoms may seem quite vague while other aHUS episodes can be life-threatening, so it’s vital that patients work together with their medical team to access multi-disciplinary care and to receive appropriate patient protocols. For newly diagnosed aHUS patients and their families, the aHUS Alliance offers this set of basic information and resources as a ‘quick start’ on the journey to learn more about aHUS.

 

 

 

 

aHUS ‘Quick Start’:  Info & Resources

A Starting Point to Learn about the Rare Disease Atypical HUS

 

 

What is atypical HUS?

 

aHUS GeneReview   Medical info, complete with links to definitions and aHUS research.

 

 

aHUS Alliance Fact Sheets

aHUS Fact Sheets – 2 versions, created for aHUS Awareness Day which occurs each 24 September.

Brief version (print friendly, one double-sided page) to share

Detailed version (11 pages, with research links and fully cited)  

 

 

 

Know aHUS:  Know Us   Available in 3 languages (EN, FR, ES)     How does atypical HUS affect patients and their lives?  (one page, double sided)  Red Leaf Graphic: How rare is aHUS?

 

 

Atypical HUS Clinical Channel (medical information) and videos of the global aHUS Patient Voice (created by advocates, patients & families)

 

 

 

 

aHUS Diagnosis

 

Atypical HUS is difficult to diagnosis, and is hard to differentiate among other medical conditions which present with similar characteristics of thrombotic microangiopathy (TMA, or tiny clots and damage to small blood vessels).

 

 

aHUS in the ICU   (Expert Statements on the Standard of Care in Critically Ill aHUS Patients)

 

 

TMA Multidisciplinary Team Approach: Accelerating the Pathway to Diagnosis  (Video)  Dr Jean Francis presents clinical information, with insights from aHUS advocates M Eygenraam (CA), M Berry (US) and E Woodward (UK).  From the TMA Symposium: Through the Lens of aHUS

 

Is it aHUS?  Perhaps it’s TTP, STEC-HUS, or another TMA  ( info for patients & families)

 

 

 

 

 

 

aHUS can affect multiple organs

 

Once considered a disease that only affects kidneys, atypical HUS can cause damage to any organ or body system.  With disease impact ranging from mild impairments to catastrophic issues, aHUS can affect organs such as the heart, central nervous system, lungs, GI tract, eyes, skin and others – in addition to cause poor kidney function or renal failure.

 

 

Atypical HUS Symptoms can be Perplexing  This article hyperlinks to other aHUS Alliance articles on specific topics regarding potential impact of aHUS on:  cognitive function (‘brain fog’), vision and eye health, pregnancy, sleep and more.

 

The Need for Cross-Specialty Care   Collaboration among specialists yields better outcomes for aHUS patients.

 

 

 

 

 

 

 

aHUS Clinical Trials

 

Clinical Trials for patients with atypical HUS may be listed under terms such as thrombotic microangiopathy, complement mediated disease, or other terminology.

ClinicalTrials.gov is a searchable website, click the link to view results using “atypical HUS” in the search bar marked Condition or Disease.

 

aHUS Therapeutic Drug Pipeline in 2018   An in-depth overview of potential new aHUS drugs in development, as well as market factors and barriers to physician involvement and patient recruitment.

 

 

 

Support & Connections

 

aHUS Patient Organizations      Many countries have nation-specific aHUS advocacy groups, some with websites and others with a social media presence on Twitter or Facebook.   National aHUS patient groups are well situated to provide insights into their country’s rare disease policies, patient concerns, and healthcare issues. Visit this list to connect directly with groups of other patients and aHUS families around the world.

R.O.W. (Rest of the World)   For those patients currently living in countries without an organization for aHUS support and connects, please email the aHUS Alliance with details about your interests at info@aHUSallianceAction.org.

 

RareConnect     Disease-specific communities allow interactions among patients, families, and rare disease advocates around the world.  Key information is regularly updated, with content translations available in multiple languages.

 

 

 

Physician Resources

 

Clinicians & aHUS Investigators     An aHUS Alliance international network dedicated to research in practice.

 

aHUS Guidelines  Atypical hemolytic uremic syndrome and C3 glomerulopathy: conclusions from a “Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference (Goodship THJ et al, 2016)

 

aHUS in the ICU   (Expert Statements on the Standard of Care in Critically Ill aHUS Patients)

 

Management of aHUS in Pediatric Patients  (An international consensus approach to the management of atypical hemolytic uremic syndrome in children)

 

aHUS & TMA Study Centers     aHUS Alliance article on the the topic of aHUS expert centers regarding clinical care, research, and collaborative initiatives.  (Visit the aHUS Alliance website and use the search bar for new developments through 2018)

 

aHUS Patient Registry:  NCT01522183    For more insight into the importance of this global aHUS patient registry, read the Orphanet Article:  An innovative and collaborative partnership between patients with rare disease and industry-supported registries: the Global aHUS Registry   

 

Atypical HUS Clinical Channel on YouTube    83 videos from top aHUS clinicians and investigators.

 

Thrombotic Microangiopathy Symposium:  Through the Lens of aHUS    Multiple videos from the MedEd event in Boston, with clinical presentations framed by aHUS patient insights on that topic.  

 

 

 

Atypical HUS 1.0 merely provides a strong platform to begin learning about this very rare and complex disease, so we encourage you to reach out to medical professionals and to stay current with aHUS research. Many organizations offer resource lists, which are a wealth of information and assistance.