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Newsletter N° 25 | March, 2017 |
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A genetic condition that can cause epilepsy-Glut1 Deficiency explained by Dr. Firas Taha: Feature Article
Over the next few issues of our newsletter, we will be highlighting certain genetic conditions that affect the brain and can often lead to seizures. Although these conditions are considered rare, it is important for this information to be disseminated to the general public to ensure that anyone afflicted with these has awareness of their existence. In this issue, we are focusing on Glucose transporter type 1 (Glut1) deficiency syndrome. We sat down with Dr. Firas Taha, pediatric epileptologist at the Northeast Regional Epilepsy Group and asked him to explain this complex disorder to us. Dr. Taha completed his child neurology residency at the Mayo Clinic Florida and his clinical neurophysiology fellowship at the New York University, New York, NY. He is board certified in: the American Board of Psychiatry and Neurology - Neurology with Special Qualification in Child Neurology and the American Board of Psychiatry and Neurology - Clinical Neurophysiology. He now treats pediatric patients in Jersey City, Morristown, and Hackensack, New Jersey.
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| Safety and epilepsy: What is Embrace® and how can it help keep someone living with epilepsy safe? |
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In this quarterly newsletter section, we will be presenting a new device that has come out on to the market of epilepsy safety devices (not yet FDA approved, but working on getting there). Embrace® can be described as "a groundbreaking wearable device designed to improve the lives of the people living with Epilepsy." It records physiological signals using its cutting edge sensors and provides information about the rest, sleep and activity information of the person wearing it. Embrace® is designed to also monitor and alert for tonic clonic (convulsive) seizures.
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| Heroes of psychogenic non-epileptic seizures (PNES): Katie and Andrea Jameson |
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Katie and Andrea Jameson didn't plan on becoming heroes for the psychogenic non-epileptic seizures (PNES) community, but life has a way of sometimes taking you down a different road than you had planned to travel. That is exactly what happened to these two brave people when Katie's father/Andrea's husband developed post-traumatic stress disorder and then psychogenic non-epileptic seizures (PNES). What is most striking is how they not only stepped up to this challenge but have done so in a unique manner that is really shining a spotlight on this mostly unknown and very debilitating illness.
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| Epilepsy Survey results |
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For this issue's survey question, we asked whether our homepage visitors agreed with the following statement or not: When someone has epilepsy, they convulse during their seizures. The results of this survey are very interesting.
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| Our epilepsy community of patients, family, friends and doctors has been busy |
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Patients, family members, friends, doctors, office managers, secretaries and nurses have all been extra-busy these last few months raising epilepsy awareness on International Epilepsy Day and some very kind and talented supporters have been knitting items to be raffled to support Epilepsy Free. Read all about the activities NEREG and their patients have been a part of this year and check out the photo gallery in the link provided!
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Support Groups
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Our support groups are back up and running through September 2016 to June 2017!
VIRTUAL SUPPORT GROUPS
Psychogenic non-epileptic seizures (PNES) support group
Third Thursday of the month until June: From 12-1PM
The group is for patients at our NEREG PNES program diagnosed with PNES who have completed treatment or who are advanced in their current treatment. Unfortunately, the group is not open to anyone who has not gone through our treatment program because the demand would be too great for our conference call. The group meets to touch base, to go over current problems that may have arisen for group members associated to PNES, for general support and comradery, and to continue to be part of the PNES community.
Joining a group is easy!
Benefits:
• All 60-minute sessions are held through GoToMeeting®
• Each group is kept small in order to encourage friendship and optimal discussion time (8-10 participants.)
• All groups are led by a facilitator who is knowledgeable about psychogenic non-epileptic seizures.
• Confidential.
• Participation in this facilitated discussion is expected and encouraged. You are not on camera, so come in your PJs.
• FREE
CONTACT INFORMATION
If you are a NEREG patient, have epilepsy and would be interested in a similar group, please contact Lmyers@epilepsygroup.com. In the past, we tried to establish an on-line group like this for our patients with epilepsy but there was limited attendance-but who is to say that we can't try again and with better results?
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Stay tuned because there are a ton of epilepsy and seizure disorder events and activities coming up in 2017 including a webinar that is being offered by Dr. Lorna Myers through the Epilepsy Foundation of Connecticut, a town hall meeting in our Hackensack, NJ offices, our New York City bike-a-thon with team NEREG supporting Epilepsy Free and Dr. Eric Segal's lecture at the Sturge Weber Conference in Ohio in July.
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Launched in 1998, Northeast Regional Epilepsy Group (NEREG) is a multi-site practice in New Jersey, New York and Connecticut that offers unique services and comprehensive care to children and adults with epilepsy. NEREG provides state-of-the-art diagnostic procedures, 24/7 patient service, highly skilled and experienced practitioners, and exceptional specialty programs designed to cover a broad range of health care needs in each epilepsy patient. NEREG consists of twenty board-certified epilepsy specialists with fellowship training in adult and childhood epilepsy, as well as many other highly skilled health care providers including pediatric/adult neurosurgeons, neuropsychologists, clinical psychologists, epilepsy nurse practitioners, a specially trained nutritionist and epilepsy advocates.
Launched in 2003, Mid-Atlantic Epilepsy and Sleep Center (MAESC) is a practice located in Bethesda, Maryland that offers neurological services and comprehensive care to children and adults. MAESC consists of six board-certified neurologists who treat epilepsy, multiple sclerosis and other neurological illnesses.
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20 Prospect Avenue, Suite 800
Hackensack, New Jersey 07601
Tel (201) 343-6676 / Fax (201) 343-6689
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333 Westchester Avenue, Suite E104
White Plains, NY 10604
(914)4289213
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