"In episode 37, Kerry Gabrielson speaks with Dr. Russell Norris, head of the Norris Lab at the Medical University of South Carolina and Courtney Gensemer, a graduate student and PhD candidate in the Norris Lab. The Norris Lab is researching potential genes that may be involved in the development of hEDS and in this podcast, they talk about their progress." 

(They will not announce the gene until it has been published.)

 

"In the four years since her diagnosis, she has joined the small ranks of doctors in the country specialized in Ehlers-Danlos Syndrome and opened a clinic in Silver Spring devoted to the condition."

"A foundation has been launched in memory of a young woman to help raise awareness of hidden disabilities."

 

"'Transforming Ehlers-Danlos Syndrome': What is the disease's history? What are its clinical signs and symptoms? Is Ehlers-Danlos Syndrome really that rare? Is it necessary to modify the disease's current classification? How is it transmitted to children? How does it evolve over the course of a lifetime? How is it managed? What treatments are available to help patients improve their quality of life? How can confusing emergency situation for both patients and caregivers be managed?  

An exercise program for people with EDS

“Wow,” was the first word that came to my mind when I started to exercise with Jeannie Di Bon’s new program: The Zebra Club. My feelings regarding Jeannie’s new app were very similar to when I read Diana Jovin’s book Disjointed, which I recently reviewed as well. However, I wouldn't be much of a journalist if that was all I had to say about Jeannie's incredible achievement.

I am completely smitten by admiration for this huge effort. So much has happened in terms of EDS over the last years, but it is only because of people like Jeannie that we, as patients, are as empowered as we are. The Zebra Club is one of many recent examples that allow us to play an active part in our health care and pave our own path without relying on doctors or other health care professionals. But now on to Karina trying out Jeannie’s app for 30 days. And if you have been wondering: No, it is absolutely impossible to finish all programs in 30 days, even if you would spend 12 hours a day exercising.

Of course, I was so excited about having a physical therapist that actually knows something about EDS that I completely overdid it, but how could I have resisted? As someone who has never had an EDS-knowledgable PT guiding me through a training program, I felt more than motivated.

In my review, my attention focused on the content on the one hand, including how adaptable the exercises were for my needs, and on the quality, design and usability from a practical standpoint.

Design, Quality, Usability

When starting any web-based or app-based new program, of course, the first thing one notices is the design of the offer. Jeannie’s app looks appealing, and I found it rather simple to navigate, with the main categories being orientation, foundation, classes, programs, resources and meet up, and then subcategories under each main category that make it easy to quickly figure out where to find the videos you need. From a journalist and filmmaker’s point of view, I was very interested to see the quality of Jeannie’s videos, and she did not disappoint. These videos are not typical homemade YouTube videos; they are high-quality visuals with great audio, and most importantly, they are filmed from different angles so that we can see how to properly execute all exercises.

 

Read the full Review

HERE 

 

 

"This EDS Survival Guide will walk you through 5 KEYS towards acceptance, peace, and taking the right actions for your unique health challenges. If you have pain, and problems from living with EDS, this book can offer you reflection, validation, and support. When you find yourself feeling like no one understands, you open this book and explore the 5 Keys of Thriving with EDS." 

 

"This week on the podcast, Dr. Kara Ayers and Dr. Susan Wiley, faculty members in our Division of Developmental and Behavioral Pediatrics, join us to talk about how parents can help their kids understand and learn about people who have disabilities."

This special issue features multiple papers on the Ehlers-Danlos syndromes, Hypermobility Spectrum Disorders, and Associated Co-Morbidities and it's free access. 

Read all papers here. 

Jon Rodis shared this promising study with us.

"We demonstrated that doxycycline-mediated inhibition of MMPs rescues in hEDS cells a control-like ECM organization and induces a partial reversal of their myofibroblast-like features, thus offering encouraging clues for translational studies confirming MMPs as a potential therapeutic target in hEDS with the expectation to improve patients' quality of life and alleviate their disabilities."

Read the paper here. 

Stanford University

Jon Rodis shared this important study with us.

Online Study for People with Chronic Pain, Treated with Daily Opioid Medications

The VALUE study is looking for adults who have chronic pain, and are taking daily oral prescription opioids or continuous delivery through an opioid patch. Adults from across the U.S. are invited to participate in this study to help us learn about people’s experiences to help future patients, families, and doctors make medical decisions about the best treatment for their chronic pain.

Participants stay in this online-only study for 1 year and are asked to complete 3 online surveys (Baseline, 6 months, and 12 months). We will ask you questions about your pain, medications, how you are feeling and doing, and how well your medications are working for you. Participants will NOT be required to attend any office visits or make any medication changes. Participants may receive up to $150 for completing 3 surveys and 3 brief phone calls to confirm their medications.

The study is conducted by researchers at Stanford University (Palo Alto, CA).

For more information: Please contact VALUE study coordinator Hannah Cunningham at hcunning[at]stanford.edu or 1-833-668-0277.

Dr. Michael Healy & University of Tennessee at Chattanooga PT Department

Jon Rodis shared this study with us as well.

"This study is being conducted to examine the sleep patterns, sleep disturbances, and interventions used to improve sleep for individuals with EDS. We appreciate your time in taking this survey and our goals are to utilize this information in the development of new research to address sleep disorders. Thank you!

Anyone from any state or any country can complete the survey.

You should not have to set anything up, you should just simply be able to click here and begin the survey."

Survey: 

https://utk.questionpro.com/t/AOm38ZmVFt