Since the start of my calling Gadolinium Deposition Disease (GDD), Gadolinium Deposition Disease, there has been dissension to that term. From patients on one side, and from radiologists/physicians on the other. Often in life when one choses the middle ground on a subject, with opposition from both extremes, it is the right course: in politics and in science.
Churchill's quotation on Democracy, which I have recently used in another blog, also applies here. But here goes with a more full explanation. The name may not be perfect, but it is likely better than any other alternative.
The advantage of using a name that starts with Gadolinium (Gd), is then there is no doubt what the term refers to, and I consider this important in Science. I am not so fond of names that are based on the name of the person who described it, which is very common with musculoskeletal findings for example - because it seems too Parochial and frankly arrogant, as it presupposes of listener/reader that, to know what it is, you have to be in the know, and an insider. A name that everyone can understand seems wise. Interestingly though, the disadvantage compared to terms like 'Nephrogenic Systemic Fibrosis (NSF)' or 'Me Too', is since the latter terms do not confer anything in specific, then it becomes difficult to criticize those words used. This may be fine with social issues, but I believe the name should contain what the issue is about, such as: 'Black lives matter'.
Gadolinium is clear. Also lets one know what the problem is. NSF does not confer what the culprit is for example, that is why some authors had suggested Gadolinium associated fibrosis (GAF) for that entity.
Deposition. It appears that the persistent presence of Gd is responsible for the long duration nature of the disease. Deposition suggests a more durable status than 'retention' for example: gadolinium is actually imbedded or sunk into the tissues. Retention conveys the sense it is just there. Some have suggested 'associated' but associated does not confer the sense of Gadolinium remaining in the body, and Gd Associated may be better applied to transient symptoms, as reported by the team of Carlo Quattrocchi et al when they used the term Gadolinium Associated Symptoms. Another alternative is 'exposure', however this may better describe acute hypersensitivity reaction, which relates to transiency, which exposure conveys, and not due to Gd remaining in the body.
Disease. In Dorland's Medical Dictionary, disease is defined as: "a definite morbid process that has a characteristic train of symptoms". Syndrome is defined as: "a set of symptoms that occur together". They sound very similar- and in general in my experience, entities that are congenital in nature and do not describe a process that creates illness, often end up being described as syndromes, whereas developed injurious conditions that are definable, and make individuals sick, are diseases. Syndromes often are a collection of findings (as in congenital diseases) which do not necessarily render a patient sick or unwell, whereas Disease conveys that individuals are sick or unwell from it. Therefore this is a Disease. This also explains why I have created a list of definite symptoms that patients should possess (at least some of), because a disease by definition has a described list of symptoms. If symptoms are perceived as amorphous and each individual unique, then it allows nay-sayers to say this entity does not exist: patients are not sick from GBCA injection, just some random undefined illness that the unfortunate sod possesses (which is the current status for the majority of patients seen by the majority of allopathic physicians). So for the entity to be recognized, treated, reimbursed by insurance companies, it must have a defined list of symptoms. This is even, and I understand this, if the full list of possible symptoms is much greater.
Many patients have suggested that since I have labelled it a disease then it makes the individual somehow responsible for the problem, and not the substance (Gd). This is absolutely not the case. Even though there may be a relatively small number of patients who develop GDD to GBCA injection, this does not mean that they should be ignored because it is their fault somehow. It still must be recognized, still must be treated, even if the numbers who get sick, compared to those that do not get sick to GBCA, are small.
Patients have favored the term Gadolinium poisoning or Gadolinium toxicity. Although Gadolinium poisoning is somewhat correct, the problem is that poisoning conveys the sense that everyone who gets a certain dose of the 'poison' should experience the effect. This is not the case, a small minority of individuals who undergo GBCA injection get sick; whereas the great majority, even after many doses, do not get sick. So poisoning is not correct, and it also creates an impression of deliberate malfeasance on the part of the administrating individuals, which is not the case either. Same is true of toxicity, toxicity again is a generic state or experience (less aggressive than the term poisoning) and does not define a specific condition or entity. Gadolinium toxicity therefore lacks a mechanistic component to the title and is actually too all encompassing, also toxicity does not suggest that it is an enduring process, which GDD is. So Gadolinium Toxicity may be the most correct alternative, but it also contains under its umbrella acute hypersensitivity reaction and NSF. Generally individuals considering that they have gadolinium toxicity are not thinking that they have these other processes, but that they have GDD.
Less is More.
A profusion of different names for the same entity is also absurd as it creates only confusion. So there is: Acute Hypersensitivity Reaction to GBCAs, GDD, and NSF, and that's it for causes of sickness (for now). There is Gadolinium Storage Condition (GSC) for those who are not sick, and I will go over that in a future blog... Critics would be better positioned to dispute the term NSF - maybe it should be Gadolinium Caused Systemic Fibrosis in advanced renal failure. That would make more sense to me than NSF. But NSF is what has come to be accepted, and I am ok with that. I have much more important things to deal with than to quibble over a name: I am trying to figure out how to identify potential sufferers in advance, and treat those who have become sick.