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(HealthNewsDigest.com) – Consider a day where you couldn’t feed yourself or even button your shirt – a day where no matter how hard you try, you can’t stop shaking long enough to sign your own name. For many patients with essential tremor (ET) this is an everyday reality.
ET is the most common movement disorder, and the second most common neurological disorder, after stroke, but despite the fact that more than 10 million people in the United States are living with ET, the general public does not understand or is unaware of the condition.
ET affects approximately 6.3 to 9 percent of people over the age of 60 and 4 to 5.6 percent of people between ages 40 to 60. With baby boomers getting older each year and a general aging of the population due to enhanced medical and technological advances, more and more people are diagnosed with the condition.
ET runs in my family, and after seeing two of my aunts’ struggle with the condition for a number of years, I realized I needed to get involved. As Executive Director of the International Essential Tremor Foundation (IETF) – a national organization dedicated to providing education, awareness and support to sufferers, as well as research dollars to studies benefitting ET – I’m able to help educate the general public about an extremely common condition that many people know nothing about.
We’re making great strides as a result of our efforts. The IETF hosts ongoing community awareness events across the country to build a better understanding of ET, and provides those affected with the basic knowledge necessary to become their own advocate when seeking treatment. The Foundation provides support and resources to seven community ambassadors and the nationwide network of 80 local support groups. We even offer an online discussion board where people can easily receive support and get their questions answered.
In addition to the emotional and educational support we offer, the IETF has helped thousands of people through substantial funding toward many promising research studies that are helping to improve the diagnosis and treatment of the condition, but there is so much more work to be done. My hope is that the IETF will continue to grow and evolve in the years to come until we find a cure.
To date, the IETF has donated more than half a million dollars through 12 research grants and a family assistance program. Recently, the IETF presented $75,000 in two research grants to promising studies in hopes to advance existing knowledge surrounding ET and current treatment techniques. The first grant supports a study observing the affects of low-dose alcohol on ET patients, as many ET suffers find that as little as one alcoholic beverage has a positive effect in suppressing tremors. The other study that was recently awarded a grant focuses on the neurotransmitter GABA – areas in the brain that have been found to affect brain signals. Current data suggests that an alteration of GABA may be a clue in identifying new treatments for this condition.
To fully round out our awareness efforts, the IETF is trying to bring knowledge not only to the general public, but also the political arena. We are currently working with several elected officials to have March named National ET Awareness Month.
It is important to spread awareness about ET because while it is not a life-threatening disorder, it can severely impair one’s quality of life, making it difficult to participate in daily activities such as eating, writing and even getting dressed can in some cases be extremely debilitating and require constant medical care.
To better understand this disorder, here are some signs, symptoms and common misconceptions surrounding ET:
ET causes rhythmic, involuntary and uncontrollable shaking of the hands, head, voice, legs and/or trunk.
There are no blood or urine tests for ET. Instead, a doctor must diagnose ET on the basis of symptoms and a neurological examination.
These symptoms closely resemble symptoms of Parkinson’s disease (PD),and therefore is often misdiagnosed, even though ET is estimated to be ten times more common than PD. The extra costs associated with misdiagnosis puts pressure on the healthcare system, which as we clearly know from the national Healthcare debate, is at a breaking point.
Unlike PD – which presents itself through a resting tremor – the tremor associated with ET occurs during voluntary movement and disappears during rest.
ET also shows genetic tendencies. Children who have a parent with ET have approximately a 50 percent chance of also showing signs of the disorder in their lifetime. However, it is not a strictly genetic condition, as it also presents itself in individuals with no family history of ET.
Although the exact cause of ET is still unknown and there is no cure for the condition, the tremor can be managed about 60 percent of the time with medication. However, in cases where ET is impeding quality of life, disabling or is putting one’s livelihood at risk and medication isn’t working, their doctor may recommend a surgical technique called Deep Brain Stimulation (DBS). Approximately 85 percent of patients have experienced improvement in their tremor after having DBS.
While the IETF is working diligently on efforts to find better treatments and help support those affected by ET, there is need for further awareness not only among the patient population, but also among the general public, potential patients and the medical community. We can find a cure for this debilitating disorder if we continue to educate our target audiences, enhance our fundraising efforts to fund more ground-breaking ET research, and continue to expand nationally as a foundation, but we need your help.
Please visit www.essentialtremor.org to learn more about the condition so you can become a better advocate for your health and the health of your loved ones. Much more, if you exhibit any of the symptoms outlined above, please call your doctor and ask about ET and available treatment options. If you are diagnosed with ET please know that you are not alone and the IETF is there to provide much needed information and resources.
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