Raising Awareness of aHUS

Raising Awareness of aHUS
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Raising awareness of rare chronic disorders such as atypical hemolytic uremic syndrome, or aHUS, could mean more patients benefiting from earlier diagnosis and treatment.

Here are some points about aHUS, and the ongoing efforts to make it more widely known.

What is aHUS?

One of about 7,000 known rare diseases, aHUS is characterized by blood clotting in the small blood vessels of the kidneys, whose major function is to remove waste products and excess fluid from the body. This clotting can damage the kidneys, leading to multiple health problems.

An extremely rare disorder, aHUS affects an estimated 1 in 500,000 people in the U.S., and 20,000 people globally.

Why is greater awareness important?

As happens with many other rare diseases, physicians frequently misdiagnose, under-diagnose, and often misunderstand aHUS.

Most physicians and other healthcare professionals have little knowledge of the disease, which can occur at any age. The syndrome also can mimic other disorders and is more difficult to diagnose without an aHUS family history.

However, the sooner a patient receives an aHUS diagnosis, the sooner treatment can begin. Early diagnosis and treatment can help maintain or improve patients’ quality of life.

Increased awareness also tends to bring greater research support, which could lead to new and better therapies, and possibly a cure.

aHUS awareness day

Awareness and education are crucial to increasing the recognition, diagnosis, understanding, and management of rare diseases such as aHUS.

To that end, each Sept. 24 is aHUS Awareness Day, set aside annually to educate and heighten awareness of the disease.

This year, the aHUS Alliance, which organizes the event, is seeking participation from the global community for a new video project. The Alliance is asking supporters to use social media to tell patients’ stories and highlight efforts to help the aHUS community.

The organization also encourages advocates to use the day to collaborate on and promote new initiatives focused on “wellness and well-being” — this year’s theme.

Other ideas for the day include:

  • Writing an article of up to 500 words about the personal impact of aHUS on the family. The aHUS Alliance may publish the narrative on its website.
  • Making a video for the organization’s social media platforms about personal experiences in returning to wellness
  • Describing a time of support for another aHUS patient or family. The organization will feature this on its website as well.
  • Taking photos of banners, posters, or events that support a local aHUS patient
  • Contacting local media to arrange an interview
  • Making a list of actions and attitudes that can help people with the disease, and sharing it on social media

A downloadable press kit, images, and other resources for the awareness day also are being offered by the organization.

Because there’s no one typical case of aHUS — underscoring the need for more awareness —  the aHUS Alliance is gathering diverse experiences globally for this year’s observance, the organization states on its website.

Internationally, organizations such as aHUS Canada also are joining efforts to raise awareness about the disease.

 

Last updated: Aug. 31, 2020

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aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”

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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.
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Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”

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