About 4000 people around the world have had aHUS since the last aHUS awareness day.
Many did not survive, they were in the wrong place at the wrong time to get the treatment they needed.
The rest hopefully adding to the 22000 or so people who have survived the encounter over the years. And many more family members or friends.
62 of those 22000 people volunteered to participate in a video about what aHUS people are capable of. There were 35 children and 27 adults participating. It is just over 8 minutes long and can be seen on YouTube.
What is extraordinary about these people is how ordinary their capabilities are. That needs to be thought about.
Apart from one patient who can tame alligators 🙂, capabilities fall into common categories.
Ten patients mention other activities whether sport or recreational like basketball , bike riding , running marathons, horse riding, climbing ,dancing , weight lifting , sunbathing or knitting.
One patient is able to entertain on stage.
Having the capability to enjoy arts and crafts is mentioned by three patients.
Another nine mention playing with toys or friends/siblings.
Seven patients attend school and colleges/ universities and three work in vocational and entrepreneurial pursuits.
Two patients mention they are able to travel.
Five have been able to enter patient advocacy.
Three participants believe they are capable of anything they put their mind to
An ability to enjoy a family life is something that seven patients enjoy and two say just having a normal life.
Nothing earth shattering , except taming alligators ,or maybe is that just an extraordinary capability to retain a sense of humour despite what aHUS did.
Rising above aHUS to do anything is like taming a wild animal when you think about. Even Jeff is finally learning to master the music instrument which accompanies the awareness day videos.
Article No. 605.