A CALL for aHUS/cTMA community support for an aHUS Day event.

aHUS Day will be on 24^th September. It is for all the aHUS/cTMA community.

The day has been set to raise awareness of the disease for 11 years now.

The name is better known now than it was back in 2015, let alone 2001 when The Foundation for children with Atypical HUS began to spread the word.

Though technically the official name is atypical haemolytic uraemic syndrome, aHUS is a recognisable disease brand these days.

The name aHUS is not stigmatising ( Leprosy was renamed Hansen’s Disease). it may be a little dated, like “dropsy” which became “edema”).

Also how the use of “kidney” seems to be preferred to “renal” these days. Change is needed to improve.

aHUS patients usually have symptoms of hemolysis and kidney injury but some don’t. They are still told they have atypical aHUS, when in reality what they have is Non-HUS aHUS, These patients are a small minority but because of this it has been suggested the name aHUS needs to be changed for all aHUS patients..

All along the abbreviation aHUS has been commonly used and accepted, but it was not compulsory and there has been a tendency in the clinical research world to use many variations of the term as well; claiming that aHUS is too vague and more specific names are needed.

It has been agreed that TMA should be mentioned as well as what started the TMA. In our case it is complement.

This year aHUS Awareness Day will be about raising awareness about the plans to change aHUS to something else.

So, the aHUS patient and carer community is being asked to say what they think about changing their name. They are are also being asked to vote in one of four options:

for
against
conditional on keeping aHUS in part of the name.
undecided.

Anyone patient or carer can join in through one of two ways :

By participation in an awareness video to be made public on the day and the individual slides will also appear in social media in the days leading up to 24 September ( see instructions on how to join in the video below)
By sending in a vote to aHUS alliance and maybe reflecting what you think about a change. But this will not be for publication. A grand total of votes will be announced on the 24th of September.

By participating in this awareness day event, you have the opportunity, along with the rest of the community, to tell those wanting to change everything what aHUS patients and families think about their intentions.

The more that participate in this event, which ever way they chose to do it in public or in private, the harder it will be for name changers to ignore.

They will have something to LISTEN to.

Not all the 27000 global aHUS patients will know about what is happening, let alone be able to participate in this event. So it is all the more important that those who can do it, do it for them too.

For Jeff to make his video participants need to give him:

– their name

– Country

– a photo

– a brief statement of what they think about changing aHUS ( in about 60 words)

– and which way they want to vote from the choice of:

1. I agree with a name change .

2. I disagree with a name change.

3. I agree with a name change but keeping the letters aHUS as part of the name .

4. Undecided

Send your details to Jeff@ahusallianceaction.org, as soon as you can before 21^st September for him to include it in the video. The earlier the better for the build up to the day.

Those not wishing to participate in the video but who want to vote for their choice send a message to info@ahusallianceaction.org where I will be monitoring and adding up votes until noon GMT 23^rd September.

Just state your choice from the 1, 2,3, and 4 candidates above. Although you do not have to, but if you want to, add the reason for your choice, I will be collecting them too.

So, the aHUS community wherever you are this is a major call to action.

Together we can make a difference when Jeff tells the “name changers” what the global patient community thinks about their idea.