“… essential tremor is a common neurological syndrome that has never been defined consistently by clinicians and researchers.” – Roger J. Elble[i]
There’s good news and bad news for essential tremor (ET). The good news springs from a much broader awareness of the motor (movement) and nonmotor (cognitive, emotional, psychological) symptoms that manifest the most common movement disorder on the planet. The bad news is, experts can’t make up their minds as to whether it’s a disease or a syndrome. The above quote identifies it as a syndrome.
So, why is that bad news? Well, it has to do with the implications of each word.
The word “disease” implies something very serious. Let’s say you get a medical opinion poll in the mail. It has a questionnaire to fill out. One of the questions asks you list any five diseases that come to mind. Your answer might include things like cancer, heart disease, diabetes, HIV, and Alzheimer’s disease. These are all serious, long-term illnesses. If the questionnaire then asked you to rank your list from most expensive (medical and research dollars spent) to least, you might have a hard time choosing, but you would surely know that for five you chose, billions of dollars are spent annually in terms of doctor visits, tests, treatments, clinical studies, etc. – not to mention the industries involved, such as pharmaceutical giants, device manufacturers, and hospital corporations.
Thus, in our society, we view “disease” as meriting a huge investment into the search for effective prevention measures and cures. Many diseases, or the nonprofits linked with them, have TV ads and public service announcements trying to raise both consciousness and money, so we often hear about breast cancer, heart disease, AIDS and other diseases.
But when’s the last time you heard about abdominal wall pain syndrome, or Halal syndrome, or polar T3 syndrome…or any other syndrome??? If the same questionnaire asked you to list five syndromes, there’s a good chance you might be stumped.
First of all, what the heck is a syndrome? One definition is, “A group of symptoms which consistently occur together, or a condition characterized by a set of associated symptoms.” There are hundreds of syndromes that trouble people, but most of us don’t even know they exist, let alone take part in a walkathon or donate money for research.
Now think about this question: Is ET a disease or a syndrome? It fits the definition of syndrome because it is a group of symptoms which consistently occur together (e.g. in some families, hand tremors also occur with voice or head tremors), or a condition characterized by a set of associated symptoms. This is where the more recent, broad exploration of the links between motor and nonmotor symptoms plays an important part. ET is progressive, meaning it can become worse and involve more parts of the body and mind; we know that many people with ET gradually succumb to cognitive decline at a rate faster than people with out ET; that psychological problems of depression and apathy may take over a person’s emotional life, and much more.
Some scholars, like award-winning Dr. Roger Elble (Southern Illinois University of Medicine) adhere to the strict definition of ET as a syndrome.[[ii] Others disagree, arguing that identifying ET as merely a syndrome belittles it. For example, Lenka & Louis (2020) assert that ET should be accorded true disease status, but qualify it as a family of diseases. They write, “A condition with the label ‘syndrome’ may not be recognized as a serious problem, may be plagued by diminished public awareness, and may not garner funds for research that a condition with the label ‘disease’ or ‘diseases’ would. ET should be regarded as a family of diseases.”[iii]
Anyone living with the distress and chronic frustration and embarrassment of ET would not feel good about having their tremors written off as a syndrome. It would be like telling a breast cancer patient just starting chemotherapy after a lumpectomy, “Well, it’s not so bad—you have a cancer syndrome.”
At Sperling Neurosurgery Associates, we have the chance to see people with ET experience a miraculous transformation when their uncontrollable and often humiliating hand tremors are tamed by Neuravive, an outpatient treatment using MRI-guided Focused Ultrasound. They feel like their days of living with what surely felt like a disease are now over, even if just their dominant hand is treated.
Our experienced, talented and empathic staff agree with the position that ET deserves to be defined as a “disease” and not merely a “syndrome.” As anyone whose life has been transformed by alleviating the burden of disease can attest, the word “syndrome” just doesn’t begin to describe it.
NOTE: This content is solely for purposes of information and does not substitute for diagnostic or medical advice. Talk to your doctor if you are experiencing pelvic pain, or have any other health concerns or questions of a personal medical nature.
[i] Elble, R. Do We Belittle Essential Tremor by Calling It a Syndrome Rather Than a Disease? No. Front Neurol. 2020 Sep 30;11:586606.
[iii] Lenka A, Louis E. Do We Belittle Essential Tremor by Calling It a Syndrome Rather Than a Disease? Yes. Front Neurol. 2020; 11: 522687.