aHUS patients are people. People are different. But only aHUS people have had aHUS. It is something they share together.
As the individual screens, which have made up the aHUS Awareness Day video for 2022, unfolded, the differences and the similarities of each participants declared personal qualities began to show. I began to take note of them.
By the time the last screen was completed and published I had summarised what 62 random patients from around the world (15 countries) had said about themselves.
Participants could only select 3 words to describe their personal qualities that matter since living with aHUS.
The wide range of qualities chosen by patients ( there were 75 different words) is as important as what qualities were stated more than once.
Both are now reflected in a word cloud so beloved of Global Action for such analysis. The size of the words in the picture are determined by the frequency they are used.
Here is that word cloud looks like.
This is what the ”together” an aHUS patient’s qualities are like. Multi facetted yet somehow united.
The aHUS patient is motivated to bounce back from adversity by showing great RESILIENCE .
Mental toughness and , innate STRENGTH forge a BRAVE, valorous and COURAGEOUS DETERMINATION , spunky like in their drive to not give up with a tenacious steadfast, fearless warrior like FIGHTING spirit . Retaining a competitiveness and personal ambition to move forward.
aHUS patient is someone who is very positive and HOPEFUL but with a realism that there has been some legacy impacts of draining anxiety and tiredness. They are found to be POSITIVE open minded, adaptable and pragmatic acceptance.
What is also noticeable about patients is that they still can be reasonable and sensitive , in a fair, loving and friendly way to others. Also thoughtful of and empathise with compassion for those around them including animals, when they can be forgiven for doing otherwise and feeling sorry for themselves and giving up.
They also feel blessed despite what life has thrown at them, declaring their GRATEFUL appreciation and a feeling of good fortune , kindness, stability and humility and also that they continue to belong and still care.
Life loving and vibrant too , with humour and fun playing its part along with a happiness, cheerfulness and joyful jubilance. Seeing advantages still
Heroes and angelic to those around them yet they can still be seen as silly and hilarious. A source of encouragement.
Patients also recognise a personal growth in themselves as a result of the illness. Being more wise ,passionate, perceptive, aware , clever ,intelligent ,smart ,brilliant, outgoing, inspired, empowered, creative , artistic and curious.
Confident in self too.
All of this is there together in the Global aHUS Patient’s Qualities Portrait.
A legacy of aAD2022.
Thanks to all video participants :
Max Deanna Riley Samuel Joris Darcey Jackie Eden Cheyanne Lisa Paige April Payton Jaac Susan Quinn Kamal Lua Ashley Adley Cariann Tre Dylan David Jace Stephanie Katelijn Elizabeth Harry Michael/Jessica Kloe Olivia Kevin Maria Margaux Teagan Karsten Joana Livia Bryson Vea Isabella Magnus Linac Selena Marie-Laurence Sara Ali-Radin Veneta Audrey Mani Rvgenia Negin Michael Tye Lisa Nadia Kamiryn Bethany Shacanna Sam Jaydin Danielle Alanna and Marco too who unfortunately did not make the cut for the video but whose qualities are in there too.
Article No. 539