Article No. 361
24 July 2020
The world’s 6th annual aHUS Awareness Day, to be held on Thursday 24 September 2020, was created by the aHUS Alliance to share information and raise awareness for the rare disease atypical HUS. People affected by aHUS face many challenges, so they strive for a return to health and well-being in all areas of their lives.
What is aHUS? Atypical Hemolytic Uremic Syndrome is a life-threatening disease characterized by the systemic formation of blood clots (TMAs) throughout the body potentially causing damage to the kidneys and other organs, with complications that may include serious or fatal events including stroke, cardiac issues, and kidney failure. It affects both adults and children and is often associated with an uncontrolled activation of the complement system, part of the body’s protective immune system. (Know aHUS, 3 languages. FMI: aHUS Resources)
aHUS Awareness Day 2020 theme: Wellness & Well-Being
24 Sept campaign Image: the KEY
There are many ways to define aHUS wellness and well-being, with unique descriptions that all provide valuable insight into the very rare disease atypical hemolytic uremic syndrome. Clinical descriptions of atypical HUS activity often neglect to describe the disease’s impact on the lifestyle of those diagnosed with aHUS. Personal quality of life as well as interpersonal relationships and family or work/school balance are also important aspects to recognize.
People living with atypical HUS can accomplish remarkable things, in both their personal and school or professional lives. Many aHUS patients face hours a week on dialysis, yet achieve goals despite their diagnosis. Some people with aHUS have isolated events, while others experience aHUS as a chronic illness or one that has damaged multiple organs. There’s no one ‘typical’ case of atypical HUS, which is why the aHUS Alliance has chosen to gather diverse situations and experiences from around the world for this year’s 24 September campaign.
What’s the key to aHUS wellness and well-being? How can we unlock new doors to building brighter futures for those living with atypical HUS? We encourage all aHUS advocates and stakeholders to express their views on aHUS Wellness and Well-Being, and invite all to use the visual and figurative imagery of a key in doing so.
The aHUS community shares common concerns and is linked through joint needs and actions into a social family that shares experiences and support. We are united in courage and purpose, and encourage your participation.
Start Now. We encourage people from all nations to begin sharing insights and information about patient experiences as well as issues regarding aHUS diagnosis and treatment. Some resources are provided below, with more information and assets to be released by the aHUS Alliance over the next few months.
Individuals, families, medical teams, service groups, researchers, and businesses around the world are all welcome to actively participate in raising awareness for atypical HUS. Feel free to join in local projects or events, there’s no need to wait until 24 September. Here are some ways to get involved.
2020 aHUS Awareness Day – Make a Difference!
‘aHUS Wellness & Well-Being’ – 24 Sept 2020 Campaign
Join in with your “KEY” to Opening Doors
for Solutions, Opportunities, Initiatives!
aHUS Awareness Day – 2020 Video Project
aHUS Awareness Day 2020 is less than 2 months away! The world will join together on September 24, 2020 for our 6th time to raise awareness for aHUS. The first aHUS Awareness Day was September 24, 2015 and was started by the aHUS Alliance.
This year’s theme is “Wellness and Well-Being”. As in past years, the aHUS Alliance is inviting our global aHUS community to join in the “celebration” of aHUS Awareness Day by participating in a video project. For this year’s project, we are asking you to tell us what your key is to recovering wellness and well-being. (Click HERE for more about the theme of our 2020 24 Sept campaign)
We welcome ALL those affected by aHUS from our global community to join in this project. Send in:
– Name & where you are from
– 1 photo
– Answer (up to 50 words) to the question “What is your key to wellness and well-being?”
Your customized slide will be created by video project lead Jeff Schmidt and be included in this year’s video/slideshow. Send in your submissions now, so we can post a slides in the lead up to 24 September, aHUS Awareness Day, helping to raise awareness of aHUS around the world in the 2 months before the video release!
Email your submission to Jeff Schmidt at firstname.lastname@example.org Submissions are due by September 17, 2020 to allow time to put this together, but the earlier you can turn in your entry the better!
Thanks to Kamal D. Shah for the 1st entry of our aHUS Day video for 2020.
See below for MORE info & Resources
Ways to Participate in aHUS Awareness Day 2020
*Keys to Open Doors: What doors need to open to improve or support aHUS Wellness & Well-Being? Utilize “keys” as a visual image to tie in to the global 24 Sept 2020 theme.
*Keys to Unlock Opportunities: What future opportunities need to be unlocked to improve or support aHUS Wellness & Well-Being? Utilize “keys” as a visual image to tie in to the global 24 Sept 2020 theme.
*Keys to New Paths & Initiatives: Organize & highlight both people and efforts which can help those in the aHUS community to build a brighter future. Collaboration can provide insights as well as unlock new directions for meaningful engagement on key aHUS issues.
*We invite aHUS organizations, families, rare disease groups, medical professionals and stakeholders in industry or research to share their insights into aHUS Wellness & Well-Being. We encourage people and organizations around the world to share their “keys” to unlock aHUS solutions and opportunities, in articles and images in all languages and with mixed media to express the 2020 aHUS day theme
*Write an article about how you & your family are affected by aHUS, helping others to understand how you view aHUS wellness or well-being. (up to 500 words long, to publish on the aHUS Alliance global website)
*Make a video about your experiences how you have worked to return to wellness, either in person or online (for YouTube, the aHUS Patient Voice channel)
*Voice your experiences about offering support to another aHUS patient or family (in writing or video)
*Sharing the Caring: Snap photos of banners, posters, or events that locally support someone living with aHUS. Explain the group or project, its goals, and what their support means to those involved.
*Contact your local media to arrange an interview on radio, local television news, or newspaper.
*Make a list of actions & attitudes regarding what ‘gets you through’ and supports you through common aHUS challenges, social or emotional challenges, economic pressures, or other stresses of daily life. Help others with aHUS cope by sharing your ‘life hacks’ in an inspirational image, aHUS Alliance article, or YouTube video.
About aHUS Day
The world’s first aHUS Awareness Day was held in 2015 on 24 September. During that same week 60 years ago the term Haemolytic Uraemic Syndrome first appeared in medical literature. HUS was given its name by Conrad von Gasser, when he and his research team described in an article for a Swiss clinical publication the illness they had been studying which caused blood clotting, anemia and kidney failure. The aHUS Alliance invites all stakeholders in aHUS community to join together and aid visibility to highlight information, insights, and issues specific to aHUS.
Resources for aHUS Awareness Day