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Ehlers-Danlos National Foundation
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"…It seems the optical sensing technology used in many of today's new, wrist-based mobile heart rate monitors is sometimes inaccurate. That's in comparison to time-tested EKG machines (or the heart rate monitors that emulate them), which sense the electrical impulses that trigger your heartbeats.

"For the casual user looking to get a resting heart rate, wrist-based devices are fine…most make it clear that this style of band is for casual use only -- never for medical use -- and that they work only when you're still."
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"Life is either a daring adventure or nothing. To keep our faces toward change and behave like free spirits in the presence of fate is strength undefeatable." (Helen Keller)
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"Conclusion: Ehlers-Danlos is a familial, transmissible pathology of connective tissue, resulting from defective protein synthesis. These alterations are responsible for numerous clinical manifestations (e.g., pain, joint disorders, fatigue, skin fragility, haemorrhages, digestive problems, ENT problems, respiratory problems, dysautonomia, dystonia, bladder and sphincter problems, oral and dental problems, and cognitive disturbances). In addition, it does not appear to be a rare disease; instead, it is actually frequent, despite the fact that many doctors are highly unfamiliar with it, thereby causing numerous iatrogenic complications. Physicians’ lack of knowledge about Ehlers-Danlos syndrome is the result of random and incomplete descriptions, which, fortunately, are beginning to be corrected in the international medical literature. Although it is known as a syndrome, it is in fact a disease whose diagnosis may be made with certainty on the basis of a set of clinical manifestations alone. Genetic tests are most often inconclusive as regards to the types of cases most often seen in clinical practice. Significant efforts have yet to be made on the international level, in order to build awareness to the disease and its treatments, and to help affected families who are all too often rejected and excluded. " 

Full PDF available: http://www.avensonline.org/wp-content/uploads/2015/07/JSYND-02-0005.pdf

Significant efforts at the international level are underway: the EDS International Symposium 2016 in New York City during May, 2016 (presented by EDS UK and the Ehlers-Danlos National Foundation, in alliance with the EDS consortium in Ghent and medical professionals internationally) has as a goal the reclassification of the diagnostic criteria for all the types of Ehlers-Danlos syndrome, and produce guidelines for medical professionals to use once a diagnosis has been reached as a universal guide for management. The updated criteria will be published in medical journals across the world.  
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"Data on people who start pain treatment yields the same conclusion: The vast majority don't misuse their drugs. Here, Czyk's case is typical. Formerly a computer systems administrator, she had suffered inexplicable pain since childhood. Eventually, she was diagnosed by specialists at Stanford with Ehlers Danlos Syndrome, a painful connective tissue disorder."
Despite the claims of some government agencies, research has shown that the overwhelming majority of addictions do not start with a prescription, and most opioid prescriptions do not cause addiction.
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Registration online for our conference in Baltimore (August 13-15) ends on Wednesday, August 5th! For more information on the conference, visit http://www.ednf.org/2015-learning-conference; to register, http://bit.ly/EDNF2015Registration. Registration will be available onsite (at a significantly higher rate).
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More on this venture to come soon! A lot of work has gone into setting the stage for this new international Ehlers-Danlos syndrome organization; it's going to make a huge difference in the lives of EDSers globally.

From Ehlers-Danlos Support UK:

• Lara Bloom to take up international role for EDS

I am writing to share the exciting news, that at the last EDS UK trustee meeting earlier in July Lara advised us that she had accepted the offer of a Chief Executive position at a new umbrella organisation called EDS International. She will start this position in August, and therefore leaves EDS UK as chief operations officer at the end of July.

• What is EDS International?

EDS International is a new umbrella organisation that will focus on strengthening the EDS communities and managing collaborative work between medical professionals in each country, bringing them together as a powerful voice for change. Lara will be working to ensure that consistent reliable evidence-based medical information is available for both doctors and patients. EDSI will develop existing support groups (or set them up where they don’t yet exist), drive collaborative research efforts, and raise awareness.

• Good news for the EDS community

This is a great opportunity for Lara, and one that is clearly too good to miss. The trustees are delighted for her and see it as reflecting the confidence the community has in Lara both in the UK and internationally. We can think of no better person to carry out this role promoting understanding of EDS across the world.

• A shared mission and continuing links

Even though Lara will no longer be on the staff of EDS UK, we are pleased that the membership and wider community, and we as trustees, will continue to benefit from her commitment, drive and determination, achieving results through this new international role. We see there being a lot of inter-action between EDS UK and EDS International, not least through delivering the 2016 international symposium on diagnostic criteria and care guidelines, and a co-ordinated international research strategy.

This inter-action will surely only grow given the shared mission that we have to carry out research and educate healthcare providers and the public on what it means to have EDS. While it will take time to develop these links and define what works best for both organisations, we are committed to doing what is in the interests of you all as EDS UK members. What it means for EDS UK The downside of this otherwise good news is that we have to say goodbye to Lara as a member of the staff team. Over the five years she has been with EDS UK she has played a large part in making it what it is today and I know she knows a lot of you personally. The trustees are keen to make sure that EDS UK services develop and become ever more useful, providing continuously improving information and support, and I know Lara wants this too.

• The EDS UK team

In continuing and growing our services, we are lucky at EDS UK that we have an extremely capable staff and volunteer team that has grown over the last couple of years as EDS UK matures as an organisation. The whole team provide an invaluable service delivering and co-ordinating the support groups, events, the helpline, our social media work, fundraising efforts, information leaflets, working with the medical community and much more.When I was appointed chair of EDS UK I was surprised that such a relatively small team achieved so much – and I continue to be surprised in a very pleasing way at the high quality work they do on behalf of the community. You would be forgiven for thinking that we had ten times the number of staff that we do!

• Medical Advisory Panel

We also have an invaluable Medical Advisory Panel, which met last week and were told of Lara’s new role. I attended the meeting and I was delighted at both their positive reaction to the opportunity for Lara's personal career development and their continuing commitment to working with EDS UK in fulfilling our objectives.

• Thank you Lara

While it will take us some time to put in place the necessary arrangements to cover everything that Lara has been doing on behalf of the community, I and the trustees are committed to doing that. Through our staff and volunteers we have a strong central team and a vibrant UK community and I am confident that we will continue to build on what Lara has achieved. I will finish by putting on record our enormous thanks to Lara for all that she has done for EDS UK to date, and I am sure you will join me in doing the same. We wish her every success in her new role and look forward to working together in the future.

Best wishes

Mark Redhead
Chair of EDS UK
(on behalf of the trustees)
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Will we see you in Baltimore next month? Don't miss our Annual Learning Conference at the Hilton Baltimore, August 13–15, 2015. For more information, visit our web site at http://www.ednf.org/2015-learning-conference; to register, go to http://bit.ly/EDNF2015Registration. There is power in not being the only person with EDS in a crowd—and this year promises to be the largest gathering we've had!
The 2015 Learning Conference will take place at the Hilton Baltimore on August 13-15, 2015.   The EDNF Learning Conference exists thanks to the generous support of our donors, sponsors, and partners.     Click here to register!   Here are some of the world-class EDS experts speaking at the 2015 Learning Conference:
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In their circles
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The new warning does not include aspirin:

"Based on our review and the advisory committees’ recommendations, the prescription NSAID labels will be revised to reflect the following information:

• The risk of heart attack or stroke can occur as early as the first weeks of using an NSAID. The risk may increase with longer use of the NSAID.
• The risk appears greater at higher doses.
• It was previously thought that all NSAIDs may have a similar risk. Newer information makes it less clear that the risk for heart attack or stroke is similar for all NSAIDs; however, this newer information is not sufficient for us to determine that the risk of any particular NSAID is definitely higher or lower than that of any other particular NSAID.
• NSAIDs can increase the risk of heart attack or stroke in patients with or without heart disease or risk factors for heart disease. A large number of studies support this finding, with varying estimates of how much the risk is increased, depending on the drugs and the doses studied.
• In general, patients with heart disease or risk factors for it have a greater likelihood of heart attack or stroke following NSAID use than patients without these risk factors because they have a higher risk at baseline.
• Patients treated with NSAIDs following a first heart attack were more likely to die in the first year after the heart attack compared to patients who were not treated with NSAIDs after their first heart attack.
• There is an increased risk of heart failure with NSAID use."

https://www.nlm.nih.gov/medlineplus/news/fullstory_153526.html

http://www.fda.gov/Drugs/DrugSafety/ucm451800.htm
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A column about advocacy from Jonathan Rodis, an EDNF friend who has Marfan syndrome. He is president of the Massachusetts Chapter of the Marfan Foundation, and chair of the Physician Awareness Committee for Marfan and Ehlers-Danlos syndromes. Jon is presenting at the EDNF Learning Conference, which begins Thursday, Aug. 13 in Baltimore.
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"Technical details aside, Crispr-Cas9 makes it easy, cheap, and fast to move genes around—any genes, in any living thing, from bacteria to people. 'These are monumental moments in the history of biomedical research,” Baltimore says. “They don't happen every day.'

"Using the three-year-old technique, researchers have already reversed mutations that cause blindness, stopped cancer cells from multiplying, and made cells impervious to the virus that causes AIDS."
We now have the power to easily alter DNA. It could eliminate disease. It could get really out of hand.
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"'To date, no signs or symptoms of adverse health effects and no pathological changes have been associated with these gadolinium deposits in the brain,' the FDA notes. However, they do err on the side of caution in their recommendation."
The FDA is investigating the potential risk for brain deposits with repeated use of gadolinium contrast agents for MRI.
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From the article: "My research group has just published work on the use of a small handheld ultrasonic emitter that accelerates tissue repair. This approach doesn’t provide the instant fix of Star Trek, but we found that healing times could be reduced by 30%. This both increases comfort for the patient and shortens how long the wound is susceptible to infection. Where such technology really comes into its own is in the treatment of individuals who don’t heal well to start with."
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People
In their circles
65 people
Have them in circles
289 people
Robin Marr's profile photo
Debbie Krueger's profile photo
Kerri Knox's profile photo
Jason Bonar's profile photo
Scott Howard's profile photo
Stephanie Meg's profile photo
Emaly Littlefield's profile photo
Sam Kennedy's profile photo
Didier Bruno's profile photo
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Resources for those affected by Ehlers-Danlos syndrome
Introduction
Ehlers-Danlos National Foundation creates resources for those affected by the connective tissue disorder Ehlers-Danlos syndrome. Any medical information found here should be discussed with your doctors thoroughly before taking action. Established in 1985 by Founder Nancy Hanna Rogowski (1957 - 1995), we are a 501 (c) (3) Nonprofit Organization with thousands of members across America and around the world. Our volunteers and their families are the life blood of EDNF and make a huge difference to those affected by EDS.
Contact Information
Contact info
Phone
703-506-2892
Fax
703-506-3266
Address
7918 Jones Branch Drive Suite 300 McLean VA 2210