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Ehlers-Danlos National Foundation
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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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"'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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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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"Scientists at the University of California, Davis, have identified a key mechanism in neuropathic pain. A biological process called endoplasmic reticulum stress, or ER stress, is the significant driver of neuropathic pain, said lead researchers Bora Inceoglu and Ahmed Bettaieb.

"'This is a fundamental discovery that opens new ways to control chronic pain,' said co-author Bruce Hammock. 'We can now specifically search for agents to control ER stress and its downstream pathways.'"
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This is a long way from useful for us, but a rather surprising development nonetheless.
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This actually makes a lot of sense to me. Especially, because I also have lupus, and many lupus patients are very sensitive to the wrong type of lighting. Many of us are also very photosensitive and cannot tolerate natural sunlight. I think that increases the pain. 
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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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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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"As I’ve researched medical child abuse over the past year, several advocacy and support groups for patients with rare diseases told me they had seen an alarming rise in medical child abuse charges: MitoAction (which supports patients with mito); the American Partnership for Eosinophilic Disorders (disorders relating to white blood cells); the Ehlers-Danlos National Foundation (a rare disorder of the connective tissues); and Dysautonomia International (autonomic nervous system disorders).

"…The task force identified these warning signs of medical child abuse: a “highly attentive parent” who is “unusually reluctant to leave his/her child’s side”; a parent who “demands second and third opinions”; a parent who “is not relieved or reassured when presented with negative test results and resists having the child discharged from the hospital”; and a parent who has “unusually detailed medical knowledge.” These warning signs accurately describe many, if not most, loving parents of medically fragile children."
Is it a crime to disagree with your kid’s doctor?
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Please consider donating items to the 2015 Learning Conference Silent Auction—all proceeds will support the Foundation!
 
New this year! The Silent Auction will open at 5:00pm on Thursday as we kick off the Welcome Reception. Final bids will be placed by the end of the day on Friday and the winners will be posted on Saturday morning.
 
Please complete the EDNF Silent Auction Donation form (http://ednf.org/sites/default/files/EDNF_Silent_Auction_Form_0.pdf) and send your completed form to Kelsey Secules at ksecules@ednf.org no later than Monday, August 3rd.

We look forward to seeing you in August!

Planning on donating? All forms must be received no later than Monday August 3rd. To be listed as an EDNF Donor in the program, your Silent Auction Donation Form must be received by Friday, July 17th. This is also the deadline if you intend to ship your Auction Donations to the EDNF office ahead of time. Any items brought onsite must be delivered to the Registration Desk by 3:00pm on Thursday, August 13th. Please note: any items shipped directly to the hotel will result in a cost to the shipper. Avoid these costs by shipping your items directly to the EDNF office by Friday, July 17th.
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People
Have them in circles
285 people
Mark Martino's profile photo
Rosalee Dunn's profile photo
Stephanie McManus's profile photo
Karen Cheetham's profile photo
Gretchen Postlewaite's profile photo
katelyn williamson's profile photo
Tamira Mogort's profile photo
Bryan Hodges's profile photo
Ehlers Danlos Syndrome Sucks!'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