Please share the doctors who are currently helping you–and you will help the group. Everyone has horror stories from doctors who just don’t get it, and this list is meant to alleviate any more of those.
The old list got rather stale. We are starting from scratch, so please enter every doctor who helps you and is currently practicing in the NYC area.
The survey has 10 questions. Please go through the survey once for each doctor you recommend.
Important: If you think a doctor would be willing to speak to one of our meetings please mention that in the notes section, which is the last question. I will follow up with you and discuss next steps.
Please click on This Link, or click above–the “Recommend a Dr.” menu item above.
Lara Bloom, the Co-Executive Director of the Ehlers-Danlos Society, spoke on Nov 22, 2016. In her remarks she described the mission of the new international charity, The Ehlers-Danlos Society (previously EDNF), and the process of the international symposium from May 2016.
The Alexander Technique (AT) is an educational method that helps a student develop awareness of their body and habitual patterns, enabling them to make safer, more efficient physical choices. With the help of a teacher, the student begins to learn how his or her body functions, and takes on an active role in deciding how to use it. Throughout each lesson, the teacher offers verbal instruction and hands-on guidance. Making small adjustments to how the student is thinking of and using his or her body can make a big difference in pain, fatigue, and injury. Over time, coordination improves and students learns how to “direct” their bodies during movement and at rest.
For those with EDS, a major benefit of AT is the reduction of pressure on the joints and thus the redistribution of muscular tone. By mastering a pliable musculature instead of gripping—which is a very common response to instability—students improve alignment naturally and gradually and avoid forcing “good posture”. As muscle tone spreads evenly and appropriately through the body, knots are released and passive areas are activated. As their awareness increases, students learn how to find the “middle ground” in every movement, so as not to extend their ligaments even further and damage them more. Alexander Technique teachers who are familiar with EDS can help hypermobile students within their instability, creating greater fluidity and ease. While far from a cure, AT lessons with a qualified, informed teacher can dramatically improve the quality of life for EDS individuals.
Dr. Norman Marcus launched his eponymous Pain Institute in 1998. He is the pioneering author of two books: Freedom from Pain and End Back Pain Forever. A past president of the American Academy of Pain Medicine, Dr. Marcus is a member of five professional societies and has presented over 100 lectures about diagnosing and treating pain to audiences throughout the world.
In 1977, Dr. Marcus co-founded and directed the first pain center in NYC at Montefiore Hospital. He went on to establish and direct pain centers at Lenox Hill Hospital in NYC (1983-1998) and The Princess Margaret Hospital in Windsor, England (1997-2001). Currently he is both the Director of Muscle Pain Research and an Associate Professor of anesthesiology and psychiatry at the NYU School of Medicine.
Dr. Marcus is a media favorite having appeared on The Today Show, CBS This Morning, Good Morning America, Fox & Friends, and The Early Show.
April 20, 2016, Dr. Marcus gave a presentation to our group.
Monday, November 9, 2015 talk on coping strategies for EDS by Dr. Albina Tamalonis, a therapist with EDS.
Living with the psychological challenges from the many limitations of EDS can be daunting to the person who has EDS, and their family and friends. The pains, restrictions, injuries, disappointments and feelings of embarrassment are hard to manage. This presentation will help with coping strategies to eliminate these issues and feelings. The focus is on hope, what strengths you have and living your life to the fullest now.
Helping people adjust to physical challenges by making a change in their thinking that less can be more. Less weight, less possibilities, less complexity and less rushing can be freeing. With an Ericksonian approach to therapy and active guided meditation this workshop will illustrate how a person can come to terms with the chronic EDS illness and reframe pain, uncertainty and insomnia. The workshop will end with an active guided meditation set to music.
1. To learn the essence of reframing for chronic illness,.
2. To learn Erickson’s guiding life principle of focusing on what is left in ones life rather than what is lost with any chronic illnesses.
Albina M. Tamalonis, Psy.D, is a licensed clinical psychologist with a full time private practice in NYC for over 25 years. She has one Masters degree in psychological research, one Masters degree in school psychology, and a Doctorate in child and adult clinical psychology. She treats people from 12 years of age and up, with an assortment of disorders. Dr. Tamalonis specializes in brief approaches to psychotherapy, which uses: meditation, relaxation and other mental techniques that alter consciousness to more easily help people change their ways of thinking and behaving. She uses active guided meditation that upgrades meditation to trance therapy to help her patients with many mind/body problems such as pain, insomnia, preparation for surgeries and healing.
Dr. Tamalonis has taught internationally at various professional societies around the world, and nationally at the American Society of Clinical Hypnosis, and the Myasthenia Gravis Foundation, to name a few. Dr. Tamalonis current interest is helping people with EDS and other chronic physical disorders, repetitive injuries and aging. She has special insight in EDS because she has it herself. Dr. Tamalonis has appeared on radio, television and a movie. She produces active guided meditation CDs with original music by her husband, Thomas Tamalonis-Olofsson. For more information about Dr. Tamalonis you can go to TherapySolutionsForChange.com.
Lara Bloom, the CEO of EDS International, brought her infectious enthusiasm to the meeting and answered questions about this truly inspirational film of trials and triumph. Shane Robinson, the Executive Director of EDNF also attended.
“The documentary follows Lara Bloom’s journey as she became the first person with EDS to walk the London Marathon and features interviews with medical professionals, families with EDS and individuals who have suffered from misdiagnosis.” – IMDB
Ever feel one of these?
o ‘brain fog’
o GI problems,
Or have you ever said…
o “Certain medicines don’t work for me.”
o “I’m sensitive to many medications.”
o “I need a very low starting dose.”
Then come to our next meeting for the talk titled:
“Why some medications don’t work – or make you feel worse – and what you can do about it.”
Genetic differences in how bodies metabolize drugs can cause all these problems. With genetic testing we can identify bad combinations of specific medicines and certain genes, find alternative meds, and avoid dangerous side effects.
We are extremely fortunate to have Dan Doherty, of Genelex, come speak about the YouScript Personalized Prescribing System, the only medication management system that assesses the cumulative effect of a patient’s genetics and entire drug regimen to determine adverse drug event risk and recommend safer alternatives.
EDSers tend to take a number of meds which tends to increase the risk of side effects. Learn what’s going on and, more importantly, what to do about it.
Dan, has been with Genelex since 2006 helping thousands of clinicians improve patient safety with personalized prescribing. He’s had a unique opportunity to speak regularly with patients and heard the impact CYP450 testing has had on the quality of their lives. He previously worked onsite 24/5 managing the daily routine for residents in a non-profit group home, seeing both the positive and negative impacts of psychiatric medication management on a daily basis. He’s previously spoken at The Children’s Coalition Against Pediatric Pain, The Mastocytosis Society and the Chiari & Syringomyelia Foundation.
Genelex’s high complexity, CLIA laboratory has more than 25 years of DNA testing experience and in 2000 became one of the first laboratories in the US to provide personalized prescribing testing for pharmacogenetics. When used while prescribing, YouScript can help providers prevent adverse drug events, improve treatment and reduce healthcare costs.
Tuesday, September 30, at 7:00-9:00 EDS-NYC-NYC will have a support group meeting at the 92nd Street Y, 1395 Lexington Avenue, (between 91st and 92nd)
Michael Bihovsky, a chronic illness advocate and activist best known for his integration of health awareness and musical theater will serve as a guest facilitator. He is the co-founder of the Philadelphia POTS support group, and writes for Stanford Medical Journal’s SCOPE project, including the article “Live Because: Living a fuller life with chronic illness.”
All are welcome, especially those who are not yet diagnosed but have questions. We will also conduct other normal meeting business.
Please RSVP via email as estimating turnout helps us prepare.
The meeting is at the 92nd Street Y. 1395 Lexington is between 91st and 92nd streets. For transportation information, the number 6 local subway stops at 96th St. and the 4 & 5 line stops at 86th St.
Mark your calendar
This event is another in our continuing effort to provide useful information and events to support the EDS community in NYC and improve the quality of life for our members. I hope you can join us Tuesday, September 30, at 7:00-9:00