Created by the aHUS Alliance in 2015 as a way to raise visibility about the rare disease atypical hemolytic uremic syndrome (atypical HUS), Tuesday 24 Sept 2024 will mark our 10th annual campaign. Since that first international ‘aHUS Day’, the aHUS Alliance Global Action team has continued to lead this annual 24 September awareness campaign by raising issues, promoting efforts, and creating resources for aHUS families and the general public.
Facing the challenges of atypical HUS isn’t limited to medical aspects, as a diagnosis of atypical hemolytic uremic syndrome (or aHUS) affects all areas of life for patients as well as their families. During the critical first few days of initial illness, patients and those who care for them meet a steep learning curve in order to understand aHUS as a rare disease. For patients and caregivers the stresses vary widely, unbalancing their lives and influencing decisions.
aHUS Awareness Day 2024 Theme: Mental Health
Dealing with atypical HUS is stressful, but few understand that once an aHUS episode occurs it’s something that continues to affect patients and their families. Whether the stress is related to the medical condition itself, or the social or economic difficulties involved, impacts on lifestyle and treatment management needed to combat aHUS contributes to an overall effect that can seem overwhelmint. Many factors are not within anyone’s control, building additional stressors into complex situations that affect aHUS families and they struggle to seek balance.
That’s why this year’s theme for ‘aHUS day’ is Mental Health. We’re asking aHUS patients and family caregivers to participate, and for professionals and organizations to join in with advocates worldwide to highlight Mental Health issues and Wellness for patients and their families.
aHUS Day Project – Guidelines & Participation
We’re pleased to announce that Jeff Schmidt is once again leading this 2024 24 September project, volunteering to create slides for patients and caregivers worldwide and then combining them into a presentation.
Here’s a word from Jeff regarding the project and directions aHUS families to join in raising awareness:
Once again, the aHUS Alliance is inviting our global aHUS family to come together to celebrate our special day by participating in a video project. For this year’s project, we are focusing on how aHUS affects our mental health. We are inviting both patients and caregivers to participate, as mental health is an issue for all of us.
To participate, send in:
– Name and where you are from
– Are you a patient or a caregiver?
– 1 photo
– Tell us about your anxiety, depression or other mental health issues
* Anxiety [occasional, frequent, continuous, or not at all]?
* Depression [occasional, frequent, continuous, or not at all]?
* Other stressors (such as social/emotional/economic stress) [occasional,
frequent, continuous, or not at all]?
– Answer the question “Has aHUS affected my Mental Health?” in 40 words or less
From there, we will create a slide (see sample below) that will be included in this year’s video/slideshow. Please start sending in your submissions as soon as today so we can post a steady stream of slides leading up to aHUS Awareness Day. This will help us raise awareness of aHUS around the world for the next couple of months!
Email your submission to Jeff Schmidt at jeff@ahusallianceaction.org
Submissions are due by September 17, 2024, to allow time to put this together, but the earlier you can turn in your entry, the better!
Important Notes:
Post-traumatic stress disorder (PTSD) requires a medical diagnosis from a qualified mental health provider, with symptoms which can be severe and significantly affect people’s lives long-term. Some aHUS patients may experience PTSD after release from an intensive care hospital stay (Azoulay et al, 2023).
In popular culture the phrase ‘PTSD’ is sometimes used casually, so any reference within this scope should be understood more generally as ‘high levels of stress which impact lifestyle and decisions” unless specifically noted as a medical diagnosis.
Seek Help: If you or someone you care about experience signs or behaviors indicating that help might be needed to deal with mental health issues, contact medical professionals or mental health teams for individualized and specialized assistance.
aHUS Alliance Global Action – Among our Website Mental Wellness Resources
‘Mental Health: Types of Therapy’ Visit: https://bit.ly/MentalHealthTherapyTypes
‘Ways to Nurture Mental Wellness’ Visit: https://bit.ly/WaysToNutureMentalHealth
‘Mental Health Toolkit & Resources’ Vist: https://bit.ly/MentalHealthResourceToolkit
Looking for aHUS Awareness Day Info & Resources?
Follow our 2024 Sept Campaign on Twitter @aHUS24Sept #aHUS24Sept
Images, Press Kit & More: Visit this link! https://bit.ly/aHUSdayInfo
What is aHUS Awareness Day? In 2015 the aHUS Alliance created the 1st aHUS Awareness Day to raise visibility about the rare disease atypical hemolytic uremic syndrome (atypical HUS). Since then, the aHUS Alliance global action team has led this annual 24 September campaign with creation of informational graphics, fact sheets, and resources to serve the needs of patients and caregivers as well as clinicians and the general public.
Currently there are over 30 nations with aHUS advocacy groups worldwide, and this annual 24 Sept campaign for aHUS Awareness Day serves to both unite and amplify patient voices about issues and needs within the atypical HUS global community. (Why 24 Sept? Learn More about aHUS Day)
