The first aHUS awareness day

More about the Reluctant Advocate.

The alliance had agreed to have the First aHUS Awareness Day on 24th September 2015.

The theme was “communication” and the idea was for aHUS patients to send out on the Day an “air mail letter” in the social media  with an aHUS message .

aHUSUK supported the project and posted a number of news items letting people know about it and explaining how to make an air mail picture.

The message I sent out on the First aHUS Awareness Day

The Awareness Day alliance leader, Linda, also suggested a ten day programme of promotional news items to draw peoples’ attention to the day.

I choose to reprise some aHUSUK  material , premier a number of videos from the aHUS Patient and Family Conference . But as a centre-piece on 20 September 2015 I featured an article about Conrad Von Gasser which had been  written especially for aHUS Awareness Day by Prof. Bernard S Kaplan.

The programme was:

10 days to go:

Video premier of Dr Kevin Marchbank’s talk at the conference together with a blog written by him about the ” knowns and known unknowns of complement and aHUS”.

9 day to go :

A reprise of the aHUS Patients Experience Report aHUSUK evidence to AGNSS, CPAG and NICE. written to give insights into what having and living with aHUS is like for those who do not know. A rare outing in the public domain for this ground breaking piece of qualitative research by aHUS patients about having and living with aHUS.

8 days to go:

I gave a brief overview of the access to eculizumab status in 15 countries around the world.

7 days to go:

An article by Prof Tim Goodship to accompany the video premier of his talk at the Conference about how genetics explains why some family member onset and others have not in a familly in Devon UK

6 days to go :

A very special day it was the 20th September the day on which Prof. Conrad Von Gasser’s article using the term haemolytic Uraemic Syndrome ( in Swiss) appeared in public for the first time. To celebrate it, Prof Bernard S Kaplan wrote a special tribute to Conrad for the first aHUS Awareness Day ( a copy of it can be found in aHUS Info click here.

The 20th was also the day that aHUSUK members were completing their research fundraising walk ” Journey for Life ” across the 5 bridges over the river  in Newcastle upon Tyne.  As a postscript to that, Prof Goodship told me  about a song he recalled from his student days, “Five Bridges” performed by a group from Newcastle called…..”NICE”!!!

5 days to go

Think aHUS ” my message for aHUS Awareness Day. In June I met  transplant surgeon Mark Stegal from the Mayo Clinic Rochester USA. He had been speaker at the “HUS and other disorders”  conference in Innsbruck , Austria. He had been introduced as a “rockstar” of transplant surgery. He talked about a case study of a patient of his where the transplant went wrong. The graft was OK but a TMA was evident . The patient had aHUS , it was found he had CFH mutation. Mark said that could have been known as the cause of the original kidney failure , but it wasn’t thought about.He said ” if you are not thinking aHUS you are not going to diagnose it” Getting people to “Think aHUS ” is what aHUS awareness day is about.

4 days to go

I reprised material about aHUSUK raising “political awareness” of aHUS.

3 days to go

A premier of the video of Prof ( then Dr) David Kavanagh’s talk at the Conference about the triggers of aHUS.

2 days to go.

Well not the day itself in UK , it already was in Tuvalu , near the international date line. aHUS Awareness Day lasts for 48 hours. I had put  3 “count down to aHUS awareness day” clocks for the furthest east , GMT, and the Midway, the furthest west now the aHUSUK Reminded about that, I recently checked the website and  I had not switched the clocks off so at the time of writing it has been over 1450 days since the first aHUS Awareness Day began!!!.  (For clocks  click here)

1 day to go.

aHUS awareness day itself so I marked it by premiering the video of the International delegates of the aHUS alliance talking at the Conference. It can still be seen by clicking here. What the speakers say still resonates within , and from , the aHUS alliance.

I also wrote an epilogue as the day closed in the far west Pacific Ocean about what I thought the day had been about. This is shown below together with some comments it received:

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 , 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.

bodmer

 

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.

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.