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Editorial by Sharon Williams
What difference does a name make? Evidently, when you are naming a disease it can make a huge difference. The name can limit the scope of medical research, and when it comes to gadolinium, it has the potential to exclude other patient populations who have been exposed to the same toxic metal.
In 1997, when a group of patients on dialysis developed what appeared to be a new skin disorder, it was called Nephrogenic Fibrosing Dermopathy (NFD). When researchers later learned that the problem went well beyond the patients’ skin and caused a systemic disease process, the name was changed to Nephrogenic Systemic Fibrosis (NSF). The word “nephrogenic” in the name caused doctors and researchers to focus on people with severe renal disease. At the beginning, that made sense since the problem only had been seen in patients with end-stage renal disease (ESRD). Later we learned more about the cause.
In 2006, nine years after NSF/NFD was first diagnosed, the connection was made between NSF and gadolinium-based contrast agents (GBCAs) administered for MRIs. Even though impaired kidney function did not cause NSF, the focus remained on the “N” or nephrogenic part of NSF. Patients with normal kidney function were being overlooked; however, they were not unaffected by retained gadolinium from GBCAs.
The two of us, Sharon Williams and Hubbs Grimm, have been working together on gadolinium toxicity related issues since 2012 and this website since 2014. Since it affects us and our many new friends personally, coming to agreement on our “message” has not always been easy but we have done it.
Recently, out of frustration with lack of progress on matters related to gadolinium toxicity from MRI contrast agents, we wanted to do a post that was both reflective of where the medical community has been on this issue and where we believe it ought to go. While we had similar ideas, we differed in how we wanted to convey the message. So, we each worked on our own editorial and then we helped each other with the final copy as we have done many times in the past.
Tomorrow we will be posting two editorials about Gadolinium Toxicity. While our approaches are different, this is not a dispute between us or an attempt to decide which is right and which is wrong. Instead, it is two people, working together with great respect for each other, expressing their thoughts in an important discussion about something that affects countless other people. We invite industry representatives to contribute to this discussion.
We hope you will read both editorials and take time to consider the important points we make.
Sharon’s editorial is titled, “Gadolinium Toxicity: If not NSF, then what is it?”
Hubbs’ editorial is titled, “Gadolinium Toxicity – Let’s not make the same mistake again”
Sharon Williams and Hubbs Grimm
Coauthors of The Lighthouse Project
A petition drive to Stop the Damage and Find a Cure for Victims of MRI Contrast Toxicity has been started at change.org. The toxicity comes from the gadolinium that is retained from Gadolinium-Based Contrast Agents (GBCAs) administered for contrast-enhanced MRIs. We hope all of our readers will sign the petition and then tell all their friends who will sign it and then tell all of their friends. With today’s social media, we have a chance to get the attention of the FDA and other decision makers around the world.
The petition was started by MedInsight Research Institute. https://medinsight.org/ and specifically by Moshe Rogosnitzky, the co-founder and Executive Director. He is an established research scientist and medical innovator whose pioneering work has resulted in the development of new treatments for various types of cancer and auto-immune diseases. We have been in touch with Moshe since late 2015 when he first contacted us about gadolinium toxicity issues.
His blog post announcing the petition drive “What price will we pay for the FDA’s faith in Gd?” lays out his case for why various actions regarding the use of Gadolinium-Based Contrast Agents are needed now. He covers many of the points we have raised and brings new insight as to why the FDA, NIH, WHO, and other organizations worldwide must Stop the Damage and Find a Cure for Victims of MRI Contrast Toxicity, the headline for the petition.
Please take action now and show your support by signing this petition at Change.org.
“Presumed Gadolinium Toxicity in Subjects with Normal Renal Function – A Report of 4 Cases”, is a landmark paper which documents the first presumed cases of gadolinium toxicity. Richard C. Semelka, MD, Radiologist at the University of North Carolina at Chapel Hill, and his colleagues are the authors. This is the first study to describe a series of patients with normal renal function who developed symptomatology lasting beyond the immediate post-injection period after the administration of a gadolinium-based contrast agent (GBCA).
Two subjects were assessed at 2 months and at 3 months after GBCA administration (early stage), and 2 subjects were assessed at 7 years and 8 years after GBCA administration (late stage). Clinical features were similar between subjects, and included central torso pain (all), peripheral arm and leg pain (all), clouded mentation (2), and distal arm and leg skin thickening and rubbery subcutaneous tissue (one early and both late subjects). All subjects had evidence of gadolinium retention ranging from one month up to 8 years after disease development.
Regarding clinical findings, the authors note that “these 4 individuals showed features that resemble and are observed in NSF patients”. “Specifically, the glove-and-sock pattern of pain (seen in all patients) is essentially universally seen in NSF, and central torso pain (seen in 3 patients) is seen with some frequency, but not universally, in NSF patients. Skin thickening and doughiness of the hands was seen in the 2 subjects with late-stage disease and is also described as a feature that progressively develops with NSF.” They also noted that “headache and clouded mentation are vague and non-specific clinical symptoms; but they had new onset in 2 subjects”. While numerous recent studies report gadolinium deposition in the brain, no histopathological changes have been documented yet. They point out that a compound may be neurotoxic without being associated with histopathological signs.
These clinical features are comparable to the symptomatology reported by Burke et al, in which the most common self-reported symptoms included bone/joint pain and head/neck symptoms including headache, vision change, and hearing change (77.6% each). (more…)