EDS-NYC Support Group Meeting September 30

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.”
www.michaelbihovsky.com

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.
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Directions:
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.

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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

www.eds-nyc.com

Pain Management speaker May 7

Wednesday, May 7, 2014, at 7PM, noted pain management researcher Dr. Barbara Siminovich-Blok will join us to discuss effective pain management strategies. (Rescheduled from April 9)
DrSimonovichBlok
Dr. Siminovich-Blok is a Naturopathic Doctor and a Licensed Acupuncturist for the States of CT and NY. She specializes in pain management, sports, integrative medicine and nutrition. She is a researcher and a clinician in Integrative Medicine at NYU Langone Medical center, Rusk rehabilitation/Hospital of Joint diseases. Her research is oriented to pain management and rehabilitation. Dr Siminovich-Blok has experience practicing integrative medicine at inpatient and outpatient settings and has a specialized private practice in midtown (Equilibrium LLC).

Having been selected for the only hospital based residence for Naturopathic Physicians in Yale/Griffin Prevention Research center, Dr. Barbara Siminovich-Blok received her degree in Naturopathic Medicine and was the recipient of the Douglas Lab Clinical Excellence Award. She possesses two Master degrees in Biochemistry and in Biotechnology. Her Bachelor Degree is in Chemical Engineering. In 2010, she graduated Summa Cum Laude with an MS in Acupuncture from the University Of Bridgeport (UB) Acupuncture Institute.

All are welcome, especially those who are not yet diagnosed but have questions. We will also conduct other normal meeting business.

Directions:
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 Wednesday, May 7 at 7PM at the 92nd St. Y (on Lex).

Shane Robinson, Exec Dir EDNF 12/12/13

The download link works.
Download link:
Shane Robinson video


Shane Robinson video

EDS-NYC Meeting with EDNF Exec Director Thur Dec 12

Thursday, December 12, at 7:00PM, Shane Robinson, Executive Director of the Ehlers Danlos National Foundation, will join us for our December meeting. He brings news of:

  • o The EDNF Center for Clinical Care and Research at GBMC,
  • o National Convention highlights,
  • o Current research efforts, and
  • o Plans for the future

This promises to be one of the most informative meetings concerning a broad range of policy and activities on a national scale. Please join us to learn about the dramatic efforts currently taking place around the country.

All are welcome, especially those who are not yet diagnosed but have questions. We will also conduct other normal meeting business.

Directions:
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 Thursday, December 12th, 7PM at the 92nd St. Y.

eds-nyc.com

Beighton v Brighton

Diagnosing EDS can be confusing. Here’s a little primer on two diagnostic tools for joint hypermobility with names that are way too similar.

The Beighton score
The Beighton score measures joint flexibility and consists of a series of nine tests. Each test carries a score of one point.

  • Hands flat on the floor with your knees straight?
  • Bend each elbow backwards? (1 pt each)
  • Bend your knee backwards? (1 pt each)
  • Bend your thumb back on to the front of your forearm? (1 pt each)
  • Bend your little finger 90 degrees, towards the back of the hand? (1 pt each)

Different rheumatologists interpret the score differently. In a survey of 319 rheumatologists 185 set the threshold at 5 while 92 found 3 sufficient, 3 required 1, while 35 would not commit.
The Brighton criteria
The Brighton criteria casts a wider net and incorporates the Beighton score while also accounting for other symptoms, such as joint pain, dislocated joints, and how long you have had symptoms. Diagnosing is something of a Chinese menu activity.

Joint hypermobility syndrome may be diagnosed if you have:

  • two major criteria or
  • one major criteria and two minor criteria or
  • four minor criteria or
  • two minor criteria and a close relative, such as a parent, who has been diagnosed with joint hypermobility syndrome

Major Brighton criteria

  • Having a Beighton score of four or more ever
  • having joint pain for longer than three months in four or more joints

Minor Brighton criteria

  • Having a Beighton score of one to three, or having a Beighton score of zero to three if you are over 50 years of age
  • having joint pain for longer than three months in one to three joints, or back pain for longer than three months, or spondylosis (spinal arthritis) or spondylolisthesis (where one small bone in your spine slips forward over another bone)
  • dislocating, or partially dislocating, more than one joint or the same joint more than once
    having three or more injuries to your soft tissues, such as tenosynovitis (inflammation of the protective sheath around a tendon) or bursitis (inflammation of a fluid-filled sac in a joint)
  • having Marfanoid habitus – being tall and slim and having long, slim fingers
  • having abnormal skin, such as thin and stretchy skin
  • having eye-related symptoms, such as droopy eyelids or short-sightedness, having swollen and enlarged veins (varicose veins), or a hernia (when an internal part of the body pushes through a weakness in the surrounding tissue wall) or a rectal or uterine prolapse (where an internal organ slips down from its usual position)

Hypermobility has a blurry boundary with EDS. Some say there is no boundary, others say there is one but just can’t tell you where it is.

For more information see this EDNF article or this NHS article.

EDS-NYC Exclusive Obamacare Explained Wed Nov 6

Wednesday, November 6, leading healthcare expert Shahriar Kahn will explain the Affordable Care Act, aka Obamacare. He will discuss the policy issues and implications for EDS at our next meeting 7pm November 6th at the 92nd St. Y. Shahriar has been instrumental in helping set up the Rhode Island exchange.

All are welcome, especially those who are not yet diagnosed but have questions. We will also conduct other normal meeting business.

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Shahriar Khan bio:
Shahriar Khan studied and worked as a biochemistry researcher at Harvard and MIT (where he earned his S.B.). He spent a great deal of time working in community health centers and hospitals, ultimately getting into medical school twice. However, he chose to study health policy instead to make sense of rapidly changing landscape in the health care world. As a Ph.D. student and teacher at NYU, Shahriar continues studying healthcare reform, medicine, and biotechnology.

Recently, he worked internationally to implement a draft national biotechnology policy in Bangladesh to align research with clinical and agricultural needs. In the US, Shahriar worked on implementing Obamacare as a researcher/practitioner in the state of Rhode Island. He has worked on insurance rate reviews, plan choice, and hospital quality improvement measures. His experience positions him well to explain what the changes mean for us.

These issues create both opportunities and challenges for the EDS community and others with orphan diseases. Learn about new paradigms in health care and insurance, ways that you can stay ahead of the curve, and how to prepare for new practice models in medicine.

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New RSVP method
RSVP right here on this link
We added a forum on our web site. Early signs show it may work.
Almost 200 people have registered with the web site.
http://www.eds-nyc.com/forums/topic/november-2013-meeting/
Please RSVP in the forum so we can estimate attendance and prepare accordingly.
Post questions there for our expert as well.

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Directions:
The meeting is at the 92nd Street Y. 1395 Lexington is between 91st and 92nd streets. For transportation information, the nearest subway is the number 6, which stops at 96th St.

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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 Wednesday, Nov 6 at 7PM.

EDS-NYC Exclusive Demo at Bent Pilates Sep 6

EDS-NYC will have a hands-on Pilates demonstration at Bent Pilates Friday, September 6th from 5pm to 7pm.

The demonstrations will start when a group is ready and take roughly half an hour so come any time and leave when you are finished.

We arranged this meeting after some members have raved about the benefits they received from Pilates. According to Cyrilla, “Teri researched EDS thoroughly to create a program for me. In April, I was such a bendy mess I hurt myself just lying on a machine. Now I’ve developed muscle, sublux much less frequently, and have more energy for daily life.”

The demonstration will involve bed-like machinery with springs, not mats on the floor. See the web-site for more information.
www.bentpilates.com

Bent Pilates Studio
754 Ninth Ave. 2nd floor
Between 50th & 51st.

When executed correctly Pilates:

  • Corrects postural problems
  • Increases core strength/stability
  • Creates freedom of movement
  • Enhances balance, strength, and flexibility
  • Heightens body awareness
  • Compliments other methods of exercises/sports performance
  • Improves coordination and circulation
  • Prevents injuries
  • Develops longer & leaner muscles
  • Flattens, tones and strengthen the abdominal area

Please RSVP so we can estimate attendance.

All are welcome, especially those who are not yet diagnosed but have questions.

This event is another in our continuing effort to provide useful tools to enhance joint stability and practical techniques to avoid injury, both of which improve the quality of life for our members. I hope you can join us.

Directions:
Bent Pilates is up a flight of stairs to the second floor. The stairs are not in great shape.
The closest subway is the C/E line 50th St Station.

You can RSVP in the form below.