EDS Documentary NY Premiere and Q&A with writer/lead 8/19/15

Issues_with_my_TissuesWednesday night we screened the NY premiere of Issues With My Tissues with Lara Bloom at the 92nd St. Y

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

Watch it here now! 48 minutes

Why Some Meds Don’t Work – April 23, 2015

Video for the presentation is at:
EDS-NYC YouScript Video Page

Ever feel one of these?
o anxiety
o ‘brain fog’
o dizziness,
o forgetfulness,
o headache,
o GI problems,
o seizure

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.

Company overview:
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.

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Video for the presentation is at:
YouScript Video Page

 

 

Slides and Video for Pain Management Meeting

Noted pain management researcher Dr. Barbara Siminovich-Blok addressed out group, and here are the slides and video of her presentation.

Slides: EDS integrative therapies presentation PDF

Video:

Dr. Barbara Simonovich Block

If all else fails here’s the
Video download link.

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.