It is hard to believe that it is nine years since aHUS alliance came up with the first aHUS Awareness Day on 24 September 2015. And remember the images of all the days since.
That was before the aHUS alliance Global Action website existed ( having its own website was another decision by aHUS alliance in 2015) .
The first image was an aerogram letter for international connection. Country , name and message were all that was needed. Photos of the image were posted on Facebook.
A recollection of the first awareness day featured in an article years later on this website. A copy can be found at this link
Having deemed the first year sufficient successful, in 2016 it was decided to change the image and that is when the red balloon image featured. And the message “Rising above aHUS” was used for the first time
Hence the lady with the red balloons on the home page of this website is a reminder. Also the first reflection blog about the day appeared on this website as an epilogue to the day.
Two innovative actions in 2016, which have become routine features of aHUS awareness day since, were the aHUS Fact Sheets , what better way to make people aware of what aHUS is , and with two versions- a long and a short! Plus an aHUS Awareness Day video giving patients and carers a participating role with minimal effort yet be very effective, if they had not had an awareness day project of their own or want to do more.
The red balloon remained a feature and the French film “Red Ballon” had been seen as a metaphor for aHUS and the closing lines of the film seemed particularly representative of awareness day by patients working together
The following year the annual routines continued. On the day itself a blog made these relevant observations about aHUS :
- aHUS is not the result of a single aHUS gene there are lots
- aHUS is not inevitable in those at risk
- aHUS is not just a Kidney disease
- aHUS is a rare clotting disorder
- aHUS is one of many thrombotic microangiopathies (TMA)
- aHUS overlaps with e .coli and other precipitating conditions within a spectrum of TMAs
Videos of Global Action’s aHUS symposium at Harvard Medical School were also premiered.
Awareness Day 2018 again had its usual video and Fact Sheet update.
By 2019 there were numerous activities including a blood donation drive as aHUS treatment frequently begins with a blood transfusion or plasma exchange. And two videos, the usual one, and one about a patient called Ros. It was also the year that the “Forget me not” image was introduced.
Awareness Day in 2020 , the first year of COVID, focused on the vision of aHUS patients using words from the annual video.
This summed up what said When enough aHUS/cTMA awareness helps everyone in the world get affordable access to the right treatment they need to be cured and be normal, it will be a good day.
Global Action also attended an online webinar on awareness day and reported what we had learned for patients.
Global Action took the opportunity of awareness day in 2021 to publish its first article of the aHUS diagnosis process series. in which 227 aHUS patient from around the world participated to make people aware of what happens in this most important part of their encounter with the disease.
We also tried a tweet challenge to get as many retweets of our aHUS Awareness Day message. Won’t be repeating that 🙂.
Last year’s awareness day we used the messages of the annual video to create the image above , which reflect the qualities of the aHUS patient.
It will soon be another awareness day 2023.
Look out for the video again and an update of the aHUS Fact sheets.
Article No. 598
And remember it all started with this image back in 2015.