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Category: Research

Complex Regional Pain Syndrome (CRPS) – A Possible Breakthrough Therapy

CRPS sometimes occurs comorbidly in those with EDS, and often “spreads” through the body. The pain can be debilitating and crippling, caused by intense burning, pins and needles and other nerve or”shock” like pain. CRPS is also known as RSD and is considered “Neuro-Inflammatory Disorder” – a condition that involves dysfunction of the nervous system and the immune system. It’s described as a condition that “occurs when the nervous system and the immune system malfunction as they respond to tissue damage from trauma. The nerves misfire, sending constant pain signals to the brain. The level of pain is measured...

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EDS Population Survey – Utah and Surrounding Areas

Make your EDS voices heard! There is a medical institution in Utah that is considering opening an EDS devoted center or clinic. One of content and copy editors and close friend has been asked to help collect data to convince the funding side of this potential project that there is a need, that there are enough of us, and that we would show up for diagnosis and treatment if a center exists. If you live in the Western US, or would be willing to travel to Utah for treatment, please take a moment to complete the following survey. Our...

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Newly identified variant of Ehlers-Danlos Syndrome – COL1A1 mutation causes mild Ehlers-Danlos syndrome

Newly identified variant of Ehlers-Danlos Syndrome – COL1A1 mutation causes mild Ehlers-Danlos syndrome Sofie Symoens UGent, Wouter Steyaert UGent, Lynn Demuynck UGent, Fransiska Malfait UGent, Anne De Paepe UGent, Karin EM Diderich and Paul Coucke UGent (2015) American Society of Human Genetics, 65th Annual meeting, Abstracts. Mark abstract Abstract Type I collagen is the predominant protein of multiple connective tissues such as skin and bone. Mutations leading to structural abnormal type I collagen mainly cause the brittle bone disease Osteogenesis imperfecta (OI), resulting in a wide spectrum of clinical severity ranging from few fractures to intra-uterine lethality with multiple fractures...

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New type of Ehlers-Danlos Syndrome (EDS) in Patients With Congenital Adrenal Hyperplasia.

New type of Ehlers-Danlos Syndrome (EDS) in Patients With Congenital Adrenal Hyperplasia Rachel Morissette*, Wuyan Chen*, Ashley F. Perritt, Jennifer L. Dreiling, Andrew E. Arai, Vandana Sachdev, Hwaida Hannoush, Ashwini Mallappa, Zhi Xu, Nazli B. McDonnell, Martha Quezado, and Deborah P. Merke Address all correspondence and requests for reprints to: Rachel Morissette, PhD, National Institutes of Health Clinical Center, Building 10, Room 1-2610, 10 Center Drive, Bethesda, MD 20892-1932. E-mail: morissetter@mail.nih.gov. *R.M. and W.C. contributed equally to this work. DOI: http://dx.doi.org/10.1210/jc.2015-2232 Received: May 08, 2015 Accepted: June 10, 2015 First Published Online: June 15, 2015 Abstract Context: The contiguous...

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Ehlers-Danlos Syndrome, Hypermobility Type, Is Linked to Chromosome 8p22-8p21.1 

Ehlers-Danlos Syndrome, Hypermobility Type, Is Linked to Chromosome 8p22-8p21.1 in an Extended Belgian Family Volume 2015 (2015), Article ID 828970, 9 pages Full Text Article Research Article Delfien Syx, Sofie Symoens, Wouter Steyaert, Anne De Paepe, Paul J. Coucke, and Fransiska Malfait Center for Medical Genetics, Ghent University Hospital, 9000 Ghent, Belgium Received 15 June 2015; Revised 1 September 2015; Accepted 10 September 2015 Academic Editor: Ralf Lichtinghagen Copyright © 2015 Delfien Syx et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided...

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#EDSFitTip – the Hip Hinge

#EDSFitTip – the Hip Hinge

(Top left pic is proper form for hip hinge – others are examples of going too far) The “hip hinge” is the perfect natural movement exercise that can be done easily. The point is to feel and learn how to engage the muscles that attach to your pelvis/SI joint and knees and to help prevent […]

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Another message from Dr. Lawrence Afrin – Thursday, July 20, 2017

Another message from Dr. Lawrence Afrin – Thursday, July 20, 2017

Another message from Dr. Lawrence Afrin: Thursday, July 20, 2017 “It has been brought to my attention that there has been much misinterpretation of my July 11 announcement.  There are several issues and misperceptions I would like to address. (1) My #1 goal my entire professional life has been to provide my patients the best […]