The requested block type of 'utility-block' does not exist. Please re-activate the block plugin or child theme if you wish to use this block again.

A UK website about atypical Haemolytic Uraemic Syndrome (aHUS)

So the First International aHUS Awareness Day is over what was it about?

So the First International aHUS Awareness Day is over what was it about?

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 that, maybe a genetic  presdisposition, 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 someones 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 other 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.

bodmer

 

The lack of a complement in inhibitor meant that  Baby Bodmer’s 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.


4 Responses to So the First International aHUS Awareness Day is over what was it about?

  1. YT Liu says:

    As a parent of young child with aHUS in Australia, I would like to say an immense thank you for all the information that has been posted here in the lead up to the International aHUS Awareness Day. I have learnt so much and especially liked the video links to the the recent conference, it has really got me more passionate about spreading the word of aHUS and also being a more confident advocate for my child’s health. Thank you!

    • aHUSUK says:

      Thank YT I am glad it was of help to you. Yeh keep spreading the word and make people think about aHUS even, tell your Clinicians about the videos as they can learn too. If they need help the speakers in the UK would no doubt be happy to hear from them.

  2. Cheryl says:

    Excellent, thank you.

    • aHUSUK says:

      Thank you very much Cheryl and let’s hope that on your lad’s 60th birthday he looks back at what you and Bill have said and done for aHUS.

Leave a reply