This image illustrates what the debate about renaming our disease is about- cause or effect.
On the left is the complement membrane attack complex. In the centre is a micro- clot of thrombotic microangiopathy and on the right are the red blood cell fragments that go to the filtration system of the kidney (not shown) and cause them to shut down and/or fail.
cTMA is to the left and centre and aHUS is to the right and far right out of sight
This is not entirely to scale and in reality it is so microscopic that it is invisible to the naked eye.
But it is that event that has a huge impact on those who have to live with aHUS because of cTMA.
This could be an illustration of the first micro clot to form at ground zero of the attack. Many will follow.
Doctors are now wanting to name the disease complement thrombotic microangiopathy for very good reasons .
Why? Because there would be a different image to illustrate every condition that can damage the blood vessel and cause a TMA e.g. TTP , MGRS , STEC-HUS , Lupus, HELLP, APS, DGKE, COVID19 etc. You name it . See below for possible images.
They need to know which is causing a TMA to give the right treatment, which in the case of cTMA is eculizumab, ravulizumab etc..as quickly as possible.
When the name hemolytic uremic syndrome was given to our disease over 70 years ago it was only the effect that had been observed, the cause was not known .
The HUS name was not solely for the E.coli version then, but included our disease and all the other causes except TTP..
Then someone called our disease atypical HUS. That was a BIG mistake and
compounded the vagueness by adding all the other TMAs under the aHUS umbrella too.
Doctors are now saying enough is enough let’s put it right.
Whether you agree with them or not you can give your opinion about it for this aHUS Awareness Day as many already have.
Click on this LINK to answer the call to action there are five days left to vote.
Are you on the left and centre, the cause, cTMA; or on the right, the effect and aHUS?
The decision is yours.
*other TMA images
TTP Image
STEC HUS Image
HELPP Image
Lupus SLE Image
Lupus SLE with secondary cTMA Image
COVID 19 TMA Image
MGRS causing secondary cTMA
Article No 823
