A global patient vision for aHUS?

Article No. 325

29 February 2020

20/20 vision is about clarity of sight. Perfect vision.

It’s a measure and is not about what is being looked at.

Vision ( or sometimes “dream” or “wish” or “prayer” ) is also about what someone sees, or a group of people see,  about a future end state.

“Good will come together” was the vision adopted by the alliance affiliates from aHUS patient organisations around the world.

Some of those affiliates were aHUS patients, others could yet  be aHUS patients, whilst others were carers for aHUS family members.

No attempt was made to define what that  “ good” looked like when it comes about. This vision  was more about achieving  it “together“.

The visions of organisations tend to be a bit nebulous but at that time five years ago  that small group of aHUS people were “finding their way”. The vision was a “working model” to be developed later.

Since agreeing that vision and its related mission the alliance has not returned to it. For some even working on it  together was not what they wished to do.

Last year the alliance featured a number of articles about the need for change in aHUS patient organisation advocacy.

For the aHUS Alliance Global Action it was evident that advocacy was changing and adapting to a new aHUS global environment.

Even though aHUS people were aHUS people and were the constant factor in what alliance Global Action  did, there was increasing uncertainty about to what end it was working.

The Rare Disease Day video collaboration for 2020 can itself influence a vision for aHUS which  we all could share. ( viewable on youtube click HERE)

Although the RDD video is primarily intended to be another aHUS  awareness activity, what participants have said would make  anyone think about what would been seen as  a “good day” one day  for those in the  aHUS world.

The video participants experience is varied in terms of where they are from, their health state and current treatment and what their aspirations in life  are , such is the diverse nature of the global  aHUS community. Some have end stage kidney failure and wanting a transplant but needing eculizumab which may or not be acccessible. Others have eculizumab but wish for ravulizumab. Some want to be , or are,  in remission not needing treatment.Some seek a cure.

But there is much which makes us all the the same too.

The featured image is a word cloud of key words derived from each of the participants individual visions. Word clouds give emphasis to the words which are more commonly used  by making them relatively larger in the cloud.

Although all the words are important and shed light against a dark background, in the collective vision of aHUS patients  the words that stand out are  “EVERYONE WORLD TREATMENT NEED  RIGHT”   and, although lesser so, but quite close to them  are “enough awareness normal cure access affordable” .

So as a result of the 2020 vision video do we get a  vision from aHUS patients around the world that is something that can give specific meaning to the ” Good” in “Good will come”?

Something like:

When enough aHUS/cTMA awareness helps everyone in the world get affordable access to the right treatment they need to be cured and be normal, it will be a good day.

Well that is something to think about. Awareness helps us shine.

In the meantime a thank you to  Wim, Beren, Chen, Debbie, Carly, Anne-Sophie, Dorota, Samuel, Natalia, Sara, Araz, Mani, Aliradin, Mani, Isabelle, Sepeh, Rylee, Olivia, Kylie, Israel, Michael, Merche, Michael, Margriet, Christina, Anna, Carley, Caroline, Nazar, Skyler, Amir, Donna, Emma, Darcey, Andi, Vea, Dima, Ayush, Kamal, Ashley, Maren, Rihanna, Limari, Sheila, Kyler, Danielle, Laurie, Bryson, Diane, Phoenixx, Khloe, Sarah, Viktoria, Bekah, Lucia, Shaun, Ava, Duke , Raven , Valencia and Jeff  for helping to bring about a first collective “Global aHUS Patient Vision”.

      Now all we need to do is make it happen?!?!?!

Most likely though when it does happen, it will not be called aHUS anymore, more likley it will  be called Complement mediated Thrombotic Microangipathy or  cTMA.

Enough global medical awareness of TMAs and Complement  will be the key to a breakthrough for all aHUS patients. The rest is economics and technology.

But on Rare Disease Day 2020 another aHUS global community  milestone has been reached with a common vision of what good might come of that.