Profile

Cover photo
Ehlers-Danlos National Foundation
177 followers|21,374 views
AboutPostsPhotosYouTube

Stream

 
Welcome to Houston, y'all!
1
Add a comment...
 
It's hard to believe that in two days I'll be seeing so many of you at conference! Travel with care, I'm waiting for you with a joyful heart.
1
Add a comment...
 
Last chance for regular conference registration online through Wednesday, July 2! We look forward to seeing you July 10-12 at the Hilton Americas in Houston, Texas. Visit http://www.ednf.org/conference for more information. 
2
Add a comment...
 
As if we didn't know, but more proof: "Autonomic symptoms, especially orthostatic and gastrointestinal complaints, are frequent extraarticular manifestations of EDS-HT and contribute to the disease burden." Full text is not public, abstract information http://www.semarthritisrheumatism.com/article/S0049-0172(14)00107-3/abstract
3
2
Jen Doyle's profile photoc. k. sandi's profile photo
Add a comment...
 
Welcome to Summer. There are some wonderful things coming up in the next couple of months. First, in July, the conference. We're in final stages of preparing now. Visit http://ednf.org/schedule-glance to see the current schedule. Looking forward to seeing y'all in Houston!
1
Add a comment...
 
Why Should I Stay at the Conference Hotel? 
• Discounted room rates: Our special EDNF rate is $160 and the regular rate is $209…that’s a 23% savings!
• Visit with new & old friends: Over half of our attendees have already made their reservations in the EDNF room block; easily meet friends in the hotel lobby, restaurant, bar, or common space.
• Convenience: Just take the elevators to get to EDNF conference sessions and social events.
• Attendees staying in the EDNF room block will be entered into a raffle for one complimentary hotel night in 2015.
• By staying in the conference hotel you’re actually supporting EDNF and helping us keep conference costs down.
• The Hilton Americas is very close to a variety of restaurants, as well as historic Market Square Park, the original heart of community activity in downtown Houston.

The EDNF Discounted Room Rate is available until Wednesday, June 18, 2014 or until the block is filled. Please call 1-800-HILTON and request the EDNF room block or mention our unique group code: 1ED. Additionally, you can make your discounted reservation online! Click here to book your discounted room https://aws.passkey.com/event/10932440/owner/11720/home. Please do not delay in making your reservation! ADA King, as well as two bed ADA Queen Rooms, refrigerators, and down alternative pillows are available on a first come first serve basis. Please contact the hotel to make a special request.
1
Zann Zsuzsannika's profile photoMark Martino's profile photo
 
Children with a connective tissue disorder will usually display warning signs before any serious problems begin to arise. Recognizing these warning signs early provides the best opportunity to positively influence the course of patients’ lives. You are in the best position to enable an EDS child’s full and happy life. The clues and complications listed here can help guide you in deciding whether a diagnosis of EDS may be worth pursuing further, and help those who have been diagnosed to stay as healthy as possible.
Cardiovascular:
• Possibility of aortic root dilatation, mitral valve prolapse, other valvular abnormalities, enlarged right coronary artery.
• Postural orthostatic tachycardia, leading to chronic fatigue, is especially found in young persons with EDS.
• Some doctors have seen onset of lipid abnormalities in EDS youth; in any case, attention to heart health should begin early.
Gastroenterology:
• Irritable bowel syndrome with constipation and/or diarrhea, reflux, food allergies, gastroparesis.
Rheumatology & Orthopedic:
• Joint hypermobility can be assessed using the Beighton scale; however, joint hypermobility also depends on age, gender, family and ethnic background.
• Excessive flattening of feet when weight bearing, pronated or everted feet, plantar fasciitis, bunions.
• Joint dislocations & subluxations apparently unrelated to specific injury.
• Chronic unexplained joint pain, commonly out of proportion to physical and radiological findings.
• Scoliosis, kyphosis and leg length discrepancy, knee/hip alignment issues.
• Premature onset of degenerative disc disease and herniated discs in the spine.
Social & Developmental:
• Depression and withdrawal from social activities due to chronic pain.
• Physical awkwardness and clumsiness.
Dermatology & Sports Medicine:
• Easy bruising, enlarged scars, stretch marks, poor wound healing.
• Frequent injuries.
• Joints may be stabilized by adequate muscular control and appropriate physical therapy.
• Long-term damage resulting from hypermobile joint “party tricks”, rotational stress, contact sports.
Maxillofacial/Dental:
• High palate and teeth crowding (prior to orthodontic corrections).
• TMJ pain.
• Early onset gingival recession and gum problems.
• Cavities, dental discoloration and dental pits.
Neurology:
• Cranio-cervical instability, cervical disc disease, Chiari I malformation.
• Syringomyelia.
• Tethered Cord Syndrome.
• Migraine headaches.

[From "EDS in Practice": Pediatric Checklist, Adult Checklist and overview of EDS at http://ednf.org/eds-practice or in PDF at http://issuu.com/markmartino8/docs/edsinpractice_final2011s]
4
2
Zann Zsuzsannika's profile photoheidi foster's profile photo
Add a comment...
Have them in circles
177 people
Mary Young's profile photo
 
Neat. "ReWalk is a motorized device worn over the legs and part of the upper body that helps an individual sit, stand, and walk with assistance from a trained companion, such as a spouse or home health aide." http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm402970.htm
1
1
c. k. sandi's profile photo
Add a comment...
 
Long-term prognosis of patients with Ehlers-Danlos syndrome and epilepsy: abstract of paper, June 25. "All patients without brain lesions showed a favorable response to AED monotherapy and were seizure-free after a few years of treatment. Patients with central nervous system abnormalities had a worse outcome, suggesting that the presence of brain lesions could influence the long-term evolution in these patients." http://www.ncbi.nlm.nih.gov/pubmed/24965265
1
Add a comment...
 
Please consider donating items to the 2014 Learning Conference Silent Auction!
  • Your donation is tax deductible
  • Your donation supports EDNF
  • Participate in competitive fun with your peers at the Silent Auction during the Closing Banquet
 
Not Sure What to Donate?
  • Anything zebra themed!
  • Popular home accessories
  • Autographed sports items, art, other memorabilia
  • Ergonomic home and office accessories
  • Jewelry
  • Restaurant gift cards for national chains
  • Amazon gift cards 
 
Please complete the EDNF Silent Auction Donation form (http://bit.ly/1l7B8xl) by Tuesday, July 1st and submit to headquarters per the instructions. (Please do not send any auction items to EDNF headquarters.)
1
Add a comment...
 
"Cebranopadol is a novel analgesic working as an NOP and opioid receptor agonist. Analgesics currently available such as oxycodone, morphine, and fentanyl act on the micro-opioid receptor, but not on the NOP receptor. Based on preclinical studies, cebranopadol has strong and broad analgesic activity in a variety of animal models of acute, inflammatory, visceral, neuropathic, and cancer pain and induces fewer side-effects than pure mu-opioids."
More than 500 patients who suffer from severe chronic pain related to cancer can participate in one of the largest trials in cancer pain in 145 hospitals spread over 21 countries worldwide.
1
1
c. k. sandi's profile photo
Add a comment...
 
Thank you for your awareness this month. Please turn your awareness into action. Every morning millions wake up with Ehlers-Danlos syndromes. Never alone. May we find the bright dawn in which we no longer know the pains and losses of EDS.
4
2
Zann Zsuzsannika's profile photoc. k. sandi's profile photo
Add a comment...
People
Have them in circles
177 people
Mary Young's profile photo
Communities
Created by Ehlers-Danlos National Foundation
View all
Story
Tagline
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