New Brunswick public health has warned health-care workers, and now the public, of a mysterious brain disease affecting dozens of residents.
Symptoms of the condition are similar to those of Creutzfeldt-Jakob disease, a rare degenerative brain disorder, but not much else is known — including its source.
There are currently 43 active cases in New Brunswick and the unknown syndrome hasn’t been identified anywhere else in the country.
News of the disease first emerged through a March 5 memo from deputy chief medical officer of health Dr. Cristin Muecke to the province’s various medical professionals. The memo asked anyone who suspects they may have come across a patient with the illness to refer them to a specialized clinic.
Here’s what New Brunswick’s chief medical officer of health Dr. Jennifer Russell has to say about the syndrome.
Q: What is this illness and what do we know about it so far?
A: So at the national level, there is a surveillance system called the Creutzfeldt-Jakob Syndrome Disease Surveillance System, and this picks up if there are neurological illnesses that resemble Creutzfeldt-Jakob disease, and if so, then they review these cases on a case-by-case basis… It is very much like what we hear about mad cow disease. They have very similar neurological symptoms. Creutzfeldt-Jakob (is) linked to a prion, which is a way that it infects the brain.
We have 43 cases identified and they are not Creutzfeldt-Jakob disease, but they are like this, and at this point, it’s an unknown etiology… The very first case was identified in 2015, then we had about 11 cases in 2019, and then in 2020 we had 24 cases. So this is unheard of; it’s very large numbers. It’s very concerning because it’s quite a rapidly deteriorating illness and it is affecting younger people. I think the median age is around 58.
And so we have a lot of research right now to see what the commonalities are between these cases. There’s a lot of questionnaires that are being utilized. We really wanted to raise awareness for the public and for health-care providers right now that if you have these types of neurological symptoms, or if you’re a family doctor and you saw somebody with some neurological symptoms you couldn’t quite put together and you go back through their files, it’s a good idea to refer them to a neurologist.
Q: So what are some of the symptoms of this illness and can it be fatal?
A: It definitely can be fatal; we’ve actually had some deaths. Some of them are inco-ordinations, slurred words, muscle wasting, things like that. It can be probably changes in mood, and it is progressive, so after you’ve had these symptoms for a certain amount of time, you’ll meet the case definition to be linked to these cases of unknown etiology.
(Symptoms include) rapidly progressing dementia; unexplained, significant weight loss; myoclonic, so that’s a really tightening of the muscles; gait attacks, which means you’re unco-ordinated, you look unsteady on your feet; and muscle atrophy, wasting of the muscles.
Q: As far as we know now, is this something that’s treatable?
A: No, unfortunately not. That’s the other part of trying to piece this all together is: if we can find the etiology, if we can find the cause, then hopefully we can prevent it. So we have a lot of work ahead of us to put all this together and find out what the sources and what the causes.
Q: Is there any speculation where this may be coming from?
A: Well, the neurologist who’s been working on this cluster, his name is Dr. Alier Marrero, feels there’s probably three different sources of possibilities. He is suggesting it could be from a food source, from a water source or an environmental source.
Q: Is this something that New Brunswick should be concerned about at this point?
A: Well, again, it’s one of those things where if you notice these types of symptoms, you get seen by your physician and make sure you get a referral to neurology.
Q: You said the first case of the illness was detected in 2015. How come we’re just hearing about this now?
A: Well, at that point, it was just one case, and there is again, with the surveillance system at the national level, there are cases that pop up once in a while. And one case doesn’t really make it something that you need to investigate in the way that we’re looking at right now.
So the larger number of cases were reported in 2019, about 11 cases, and then in 2020 there were 24 cases. Those are very large numbers, and so at that point in time, we did meet with the folks at the national level. They have identified that this is indeed a cluster; they all meet the case definition and so we’ll be basing all of our research right now on that.
Editor’s note: This Q&A has been edited for clarity and Global News style.