One of the most widely read articles on this website has been an article about aHUS name The rose article was the first article which was about the variet of, and inconsistency in, the disease name aHUS. That was written in 2016.
The following year having noticed that there was aHUS “name changing creep” taking place among the medical profession , particularly the use of Complement mediated TMA was when the following article appeared.
That was followed by a 2018 article https://www.ahusallianceaction.org/what-do-you-call-it/ which was about ASN Kidney Week and how the CTMA was more prominent in research poster searches than aHUS.
It was becoming an uncoordinated movement adding to the confusion about aHUS that already existed. Global Action was beginning to be concerned about the impact on patients with an aHUS diagnosis and the branding of its advocacy “aHUS Global Action” . All our assets and legal documents were based on the name “aHUS”
What followed in 2019 was probably the biggest analysis of our disease name to date in a three part article with prophetic title “ aHUS Is its end really nigh ?”
In these articles the history of nomenclature for our disease was outlined as well as Global Actions views on the case for change and what names might look like. But it was certainly a topic that Global Action stood out as having a concern about and interest in.
In 2020 two more articles appeared which demonstrated that specific disease definition was not just semantics but important for diagnosis and prognosis but in the case of aHUS in its widest sense it would be a very difficult and complex thing to do.
In 2021 Global Action had no sooner written about aHUS name change discussions in the past in https://www.ahusallianceaction.org/in-the-babble-of-names-ahus-is-more-than-a-liger/ than it heard that a project group had be set up to review our disease name and consider how any changes might be introduced. Patients were excluded from that debate.
Anyway we would have to wait, who knows how long, until they were ready to tell us our fate.
In 2022 an article to demonstrate how our current terminology was difficult to follow appeared in the questions raised in the Rare Disease Day video answers series . https://www.ahusallianceaction.org/difference-in-ahuss/ and another imagining the name aHUS disappearing. Global Action had not forgotten the implications of what was being discussed without us, would mean.
In 2023 another article appeared which again illustrated how confusing current nomenclature is.
So over the years aHUS patients have been given the chance to know about what will hit them when their disease name changes. They have been alerted.
No more can be done until the Project Group reports, when that will be is not known. But Global Action will continue to communicate to patients about this topic, as it has done for over seven years now.
aHUS names are vague and confusing but changing them is not so simple. So Global Action will still both answer and ask important questions.
Like would someone with Lupus /SLE TMA be a part of the, or know about, thec CM TMA Community as all that is shared is the TMA diagnosis , but not treatment and prognosis? And should n’t Lupus Patient Organisations advocate for them? Similarly those who could be called DGKE TMA , a different disease , with its own name would it be possible in time for that group to get together and advocate globally for themselves.
And when should a Complement Mediated TMA Awareness Day be? Name your date. In April maybe ?
A lot will need sorting out when the new name comes u and it is coming.
Meanwhile aHUS Awareness Day will be on 24 September.🙂
Article No. 597