As the sun sets on the Pacific Ocean somewhere near Midway Island. the First International aHUS Awareness Day comes to a close.
All across the globe aHUS people have done something to make a noise , whether it was appearing in the media, holding awareness stalls in hospitals, posting stories on the internet or making a personal statement about their situation.
Everyone is different but underneath it all ,there is something , maybe a genetic pre-disposition, or a similar shocking encounter with the disease, that unites us.
Some did not participate because the outreach was not enough, others chose to play no part lucky enough to have access to treatment and for them that is enough.
One notable single achievement of aHUS Day was hearing from an aHUS patient from Pakistan who had heard about the day and wanted to make a statement.
It was interesting to read the personal statements that came by “air mail letters”.
aHUS is with everyone for life, but maybe their treatment will not be. Having aHUS does not define a person, no body can see the life threatening events going on at micro biological level,. To the world an aHUS person is just a person.
Except when complement is not inhibited and organs are destroyed, because then the world may not see the complement disorder, but what the destruction of major organs can do to someone’s outward appearance, including consequential damage to other organs and severe scarring from chronic dialysis.
aHUS patients with eculizumab can dodge that bullet. Having eculizumab is like taking a supplement to boost something in the body that is lacking ,by adding a micro biological entity to make complement work for, not against the person. With that boost the person is no different to anyone else.
aHUS patients do not live to infuse complement inhibitors but infuse a complement inhibitors to live , a free and regular life.
For some what happens to others with aHUS can be shut out, for others it may mean they want to share information so that those others encountering the frightening onset of aHUS can have someone to talk to or lookup on the internet, for others it may mean raising funds so that more answers for aHUS can be found,or that their aHUS health service delivers excellence.
Who knows what it will mean for that aHUS patient in Pakistan now that they are engaged with others?
As for the aHUS website ,the blogs in the 10 day lead in to International aHUS Awareness Day has left a legacy of information for those with aHUS including five videos of the June conference talks, some information of what happens elsewhere in the word in 2015, some items about aHUSUK’s achievements and a specially written article about the History of HUS.
Baby Bodmer remains defined by aHUS as the hand written amendment to the baby’s cause of death shows.
The lack of a complement inhibitor meant that Baby Bodmer and family were denied a 60th birthday party in the past twelve months.
It makes you think! But that is what International aHUS Awareness Day was all about.