Essential Tremor and the Power of One

Have you heard of the power of one? I don’t mean the movie or the novel on which it was based, though each of them conveys what the concept is all about. At its core, the power of one is about the difference a single individual can make. Sometimes, the person is a charismatic leader who changed history. More often, however, the individual is you, me, and those around us whose small choices and actions are like drops of water that make their way to a brook, then into a river, and eventually a huge ocean.

You can make a difference

“Who, me?” you may wonder. Yes, you—and you don’t even have to leave home to do it.

There is a powerful new force in medical awareness and research called patient registries. These are enormous banks of pooled information voluntarily submitted by patients. According to one description, it is “…a collection of standardized information about people who share a common condition or experience”.i

Just imagine how an ocean of apples-to-apples information about essential tremor (ET) could affect knowledge about genetics, the effectiveness of treatments, research into new treatments, and international communication among experts and students alike. Participants also benefit, since being registered can give access to information about research studies and clinical trials.

Did you know that a PIN (Patient Insights Network) for those with ET already exists? It’s an easy way to help researchers connect the dots. What causes ET? Who develops it? How much runs in families vs. non-hereditary incidence? What affects quality of life? Why does one treatment work for one person but not another? Your information and experience, the power of one, adds up to medicine-changing power of many.

PIN for ET

The International Essential Tremor Foundation (IETF) makes a special ET registry available to you. It’s simple to register online or, if tremors keep you from using a keyboard, have a trusted family member or friend help you enter your information. You immediately become part of a true force for change, not just for yourself, but for countless others.

Among the benefits to you is access to information about ET and what’s happening in the world of clinical services and science. Are there risks? Many patients are concerned about the privacy and safety of the information they contribute, but rest assured. Online PINs have top-level security. Another risk is having too high of expectations about what you might find out about your own case. No, it won’t tell you if you have a particular gene mutation or at what point your tremors might become more severe.

However, if you are interested in contributing to global knowledge and research into ET, the brief time it takes to enroll yourself can be one of the most rewarding things you ever do for yourself and others. All it takes is visiting the PIN on ET to check it out—and your faith in the power of one.

iLaliberte, Richard. “The Power of Many.” Neurology Now, October/November 2017. Pp. 32-6.

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