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aHUS News is a digital platform providing daily updates on research, science and advice news for aHU

29/02/2024

After a harrowing diagnostic hospitalization and years with aHUS, columnist Shalana Jordan knows that being rare doesn't mean being lonely. https://buff.ly/3IkpOCK

28/02/2024

Soliris and hemodialysis improved kidney function in a man with end-stage kidney disease, who was diagnosed with aHUS after a transplant. https://buff.ly/3P0IAmf

22/02/2024

Columnist Shalana Jordan is sometimes asked to try new medications to treat her aHUS and other conditions. Recently, the outcome was bad. https://buff.ly/48sfnHC

21/02/2024

Researchers attribute the children's poor prognosis to triggering events, the unknown mutational profile effect, and treatment delays. https://buff.ly/42RSqMT

15/02/2024

Columnist Shalana Jordan's high blood pressure was one of the first signs of her aHUS. Today, she still struggles with severe hypertension. https://buff.ly/3SXg0Vh

14/02/2024

At the onset of aHUS, high levels of antibodies against the complement protein factor B were linked to disease severity in children in India. https://buff.ly/3uzcPJU

07/02/2024

A 69-year-old-woman with aHUS carried mutations in the CFI and the DGKE genes that had not previously been associated with the disease. https://buff.ly/3uoOqH4

01/02/2024

Navigating aHUS as an adult is hard, columnist Shalana Jordan says. But what about all the children living with rare diseases? https://buff.ly/48X45fB

31/01/2024

Genetic testing found mutations in the CFB gene tied to aHUS that can leave a patient "susceptible to cardiovascular disorders," report says. https://buff.ly/3So4n8c

26/01/2024

Chronic fatigue is common among patients with atypical hemolytic uremic syndrome. Columnist Shalana Jordan shares her fatigue struggles. https://buff.ly/42f3BPr

24/01/2024

In cases of atypical hemolytic uremic syndrome occurring postpartum, getting diagnosed and treated early is key for better outcomes, a report says. https://buff.ly/3OgMeb9

23/01/2024

Columnist Shalana Jordan, who has difficulty with the regulation of her body temperature, always feels cold in the day and hot at night. https://buff.ly/4bjsWvU

17/01/2024

A 11-year-old boy in Nepal was diagnosed with aHUS after having symptoms such as headache, low appetite, fever and shortness of breath. https://buff.ly/3Si6YSl

16/01/2024

Help connect rare disease communities for more effective advocacy and support for all. Take our survey for a chance to win 1 of 10 $50 Amazon eGift cards: https://bit.ly/3vJk568

11/01/2024

Becoming ill with aHUS after a COVID-19 infection almost killed columnist Shalana Jordan, but then it opened doors to a new life. https://buff.ly/3tH4RhE

10/01/2024

A man, 67, developed aHUS and AAV, autoimmune diseases associated with blood vessel and kidney damage, three weeks after a COVID-19 vaccine. https://buff.ly/3NZH57f

09/01/2024

Columnist Shalana Jordan tries to describe the range of Soliris side effects she experiences shortly after an infusion to treat her aHUS. https://buff.ly/3tNtIjM

03/01/2024

The case of a woman with pregnancy-related atypical hemolytic uremic syndrome highlights the importance of prompt diagnosis and treatment. https://buff.ly/48J9Wot

21/12/2023

Among 13 aHUS patients who started taking Soliris, seven survived and saw their disease-associated biomarkers normalize, a study showed. https://buff.ly/3tAUHie

20/12/2023

https://buff.ly/3ttUehZ

14/12/2023

Columnist Shalana Jordan credits Soliris, approved by the FDA in 2011, with offsetting the damage from atypical hemolytic uremic syndrome. https://buff.ly/4aywgD5

13/12/2023

A team of five experts from across Spain got together to reach a consensus on a set of recommendations for how to best manage aHUS in adults. https://buff.ly/3RGeDcS

07/12/2023

Columnist Shalana Jordan details the many types of chronic pain she's experienced over several years of living with aHUS. https://buff.ly/46NMbde

06/12/2023

An 18-year-old girl with a mutation in the C3 gene developed aHUS, manifested as lung bleeding, after undergoing kidney transplant surgery. https://buff.ly/486MeSA

30/11/2023

Columnist Shalana Jordan details her symptoms of medical PTSD, years after spending months in intensive care and being diagnosed with aHUS. https://buff.ly/46HwxjE

29/11/2023

A delay in diagnosing and treating a woman with pregnancy-related aHUS may have contributed to her kidney failure, a U.S. case study says. https://buff.ly/47xP4QF

23/11/2023

Columnist Shalana Jordan describes how she must take extra precautions during cold and flu season, because she is immunocompromised. https://buff.ly/49Syhts

22/11/2023

A rare CFHR5 gene mutation may have led to the excessive activation of the immune complement system, triggering aHUS in a 5-year-old girl. https://buff.ly/47pNuAe

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AWIR% Learning From Each Other

Patient advocate Liza Bernstein explains how #AWindowIntoRare will highlight what we can learn from each other as members of the #raredisease community. Join #BioNews in an online panel discussion + Q&A on #RareDiseaseDay at 3 p.m. EST Feb 28. Register: https://bit.ly/Bionews_RegisterNow

Rare Disease Day - A Window Into Rare

Patient advocate Liza Bernstein gives some insight into what will be discussed during "A Window Into Rare," our #RareDiseaseDay online panel discussion on Feb. 28. Register for this live event here: https://bit.ly/Bionews_RegisterNow #AWindowIntoRare #BioNews

A Window Into Rare - Rare Disease Day

"I have an understanding of what it feels like to feel isolated and erased": Patient advocate Liza Bernstein is hosting "A Window Into Rare," our #RareDiseaseDay panel discussion on Feb. 28. Register for this live event here: https://bit.ly/Bionews_RegisterNow #AWindowIntoRare #BioNews

We are Rare. We are BioNews.

AHUS News is part of the BioNews family, and 60% of us behind the scenes live with a rare condition. This is why we strive to provide you with trustworthy content, meaningful resources and a safe space. #WeAreRare. We are #BioNews. Learn more: https://bionews.com #RareDiseases #AHUSNews #AHUS #AtypicalHemolyticUremicSyndrome #LivingwithAHUS #AHUSCommunity

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