This is the 700 th blog article about aHUS on this website.
When thinking about how to mark this milestone a gimicky idea came to mind to list 700 facts about aHUS.
Then we thought better of it as such a list would probably take more than one hours to read!!
So we have come up with a top 20 basic facts about aHUS.
Would they be in your top 20? If not what would you say?
So here it goes ( in 2 minutes!)
1. aHUS stands for atypical hemolytic uremic syndrome, a rare disease caused by dysregulation of the complement system.
2. Unlike typical HUS (usually caused by Shiga toxin-producing E. coli), aHUS is not linked to infections but to genetic or acquired complement dysregulation.
3. aHUS is a form of thrombotic microangiopathy (TMA), characterized by blood clots in small blood vessels.
4. Key symptoms include microangiopathic hemolytic anemia (MAHA), thrombocytopenia, and acute kidney injury (AKI).
5. aHUS has an incidence of 0.5 cases per million people per year, and it’s prevalence makes it a very rare disease.
6. aHUS can affect individuals of all ages, but it’s often diagnosed in children and young adults at any time of the year.
7. Female patients may develop aHUS during or after pregnancy due to complement activation.
8. The hallmark of aHUS is dysregulated complement activation in the alternative pathway.
9. Triggers such as infections, surgeries, or pregnancy can initiate disease episodes.
10. Before complement inhibitors, the mortality rate of aHUS was up to 25% during the first episode.
11. Relapses are common without proper treatment, occurring in 50–70% of cases though treatment discontinuation is possible .
12. Acute episodes of aHUS frequently lead to end-stage kidney disease (ESKD) in untreated patients.
13. Early treatment with complement inhibitors significantly improves survival and kidney function.
14. aHUS is part of a group of diseases called TMAs, which include TTP and STEC-HUS.
15. Unlike TTP, aHUS is not caused by a deficiency in ADAMTS13 activity.
16. The complement system includes three pathways: classical, lectin, and alternative.
17. aHUS results specifically from the alternative complement pathway dysfunction.
18. Dysregulated complement activation causes endothelial damage, platelet activation, and microthrombi formation.
19. aHUS is not curable, but it is manageable with targeted therapies.
20. Quicker and more accurate diagnosis and treatment have dramatically reduced the disease burden in recent years.
So now rather than another 680 basic aHUS facts we have listed 10 facts about the aHUS alliance Global Action if you are not familiar with us. ( a minute read )
1. Global Advocacy for aHUS Awareness
aHUS Alliance Global Action is dedicated to raising awareness about atypical hemolytic uremic syndrome (aHUS), a rare and life-threatening disease, on a global scale.
2. Founded in 2016
The organization was established in 2016 following the uniting of national aHUS patient groups, advocates, and stakeholders under a shared mission of good coming together by improving outcomes for aHUS patients worldwide
3. Focus on Patient-Centered Advocacy
The Alliance emphasises the importance of patient and caregiver perspectives, advocating for better diagnostics, treatments, and support systems for individuals living with aHUS.
4. Active in more than 30 Countries
aHUS Alliance Global Action has a global reach, collaborating with advocacy groups and healthcare professionals in over 30 countries to improve the lives of those affected by aHUS.
5. Key Contributor to World aHUS Awareness Day
The Alliance established and continues to lead the annual World aHUS Day on September 24, a global event that raises awareness about the disease and highlights patient stories.
6. Resource Hub for the aHUS Community
Through its website, the Alliance provides a wealth of resources, including educational materials, research updates, and advocacy tools for patients, caregivers, and healthcare professionals.
7. Promoting Rapid Diagnosis
The organization advocates for the timely diagnosis of aHUS, often within a critical 7-day window, to prevent irreversible complications and improve patient outcomes.
8. Facilitating Research and Collaboration
The Alliance works to bridge gaps between researchers, clinicians, and patients, facilitating discussions and research initiatives that improve understanding of aHUS and its treatment.
9. Championing Rare Disease Policies
The organization actively engages in rare disease policy advocacy, urging governments and healthcare systems to prioritize aHUS and other rare diseases in funding, awareness, and treatment accessibility.
10. 700 Blog Articles and Counting
With an archive of hundreds of blog posts, the Alliance serves as a critical information hub, covering topics ranging from aHUS research breakthroughs to patient advocacy stories and global initiatives.
These facts highlight the essential role of aHUS Alliance Global Action in uniting the global aHUS community and driving progress in awareness, research, and advocacy.
Although not included in this blog , Global Action has actually compiled a list of 700 aHUS facts and is not stopping there! One thousand?
We have entered a new era of aHUS information for anyone, anywhere, anytime in the world. There really are no limits to what can be found out about aHUS it is now about where to draw the line.
Article No. 700
