Transforming Ehlers-Danlos Syndrome: A Global Vision of the Disease - The Epigenetic Revolution - Emergencies
“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 situations for both patients and caregivers be managed?
These are only a few of the questions that this book attempts to answer precisely, with specific treatment regimens adapted to the unique situations that any family physician or specialist may encounter. Dr. Stéphane Daens collaborated with thirty specialists from around the world to get a better understanding of this disease, which remains underdiagnosed and poorly understood. Patients experience severe medical wandering and a more than two-decade delay in diagnosis because of the lack of knowledge about the disease. Although it is often confused with Fibromyalgia, Ehlers-Danlos Syndrome necessitates a completely different approach to treatment and management. It is a hereditary condition with currently unclear transmission pathways. This book introduces novel concepts involving the disease transmission and evolution over a lifetime. Aside from classical genetics, the role of epigenetics, mast cells, autonomous nervous system, proprioception, nutrition, and microbiota appears unavoidable.
Main author: Doctor Stéphane Daens. Co-authors: Doctor Isabelle Dubois-Brock, Professor Claude Hamonet, Professor Daniel Frédy, Doctor Trinh Hermanns-Lê, Mr. Olivier Hougrand, Professor Jaime F. Bravo, Professor Stephen W. Porges, Doctor Katja Kovacic, Doctor Jacek Kolacz, Mr. David Leroy, Mr. Dominique Ouhab, Professor Michel Vervoort, Professor Andràs Pàldi, Doctor Daniel Grossin, Doctor Pradeep Chopra, Doctor Norman Marcus, Doctor Jessica Pizano, Doctor Michael P. Healy, Professor David Levine, Professor Anne Maitland, Doctor Georges Verougstraete, Doctor Georges Obeid, Doctor Kambyse Samii, Doctor Richard Amoretti, Doctor Emmanuel Tran-Ngoc, Doctor Michel Horgue, Professor Antonio Bulbena-Vilarrasa, Professor Carolina Baeza-Velasco, Professor Andrea Bulbena-Cabré, and Mrs. Dominique Weil.
“This book is not only an anthology of what is currently known or said about Ehlers-Danlos; it is also a practical essay for both practitioner and patient.” Prof. Claude Hamonet, Physical Medicine and Rehabilitation, Paris, France.
“In reading this volume, I have gained an appreciation for the progress that has been made in understanding and treating EDS.” Prof. Stephen W. Porges, Neuroscience, North Carolina, USA.
“Doctors, patients, and anyone else interested in EDS will find everything they have ever wanted to know about this disease in this fascinating book.” Prof. Michel Vervoort, fundamental geneticist, Paris, France.
“Here is a new bible for EDS patients, that serves as a beacon, lighting the way for those in pain, often despair, and hiding in plain sight of the modern, biomedical community.” Prof. Anne Maitland, Internal Medicine, Allergy & Immunology, New York, USA
The Symptom-Based Handbook for Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders
Symptomatic: The Symptom-Based Handbook for Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders offers a novel approach to the subject, structured around the panoply of symptoms those with Ehlers-Danlos syndromes and hypermobility spectrum disorders may describe to their clinicians. The content is arranged intuitively from head to feet. Each chapter integrates a clinical case study with a concise discussion and two important tools: a simplified algorithm for diagnosing and managing each symptom; and differential diagnoses (i.e. alternative explanations) for the symptoms. Combining the expertise of some 70 leading clinicians representing more than 30 specialties, the content is suited for clinicians who need a concise presentation of the various and complex symptoms they confront in their practice. It also aims to inform and empower patients, helping them understand the nature of these concerns and their management. This handbook advances an integrative understanding of this emerging interdisciplinary field, bridging the gaps between the several dozen specialties germane to EDS and HSD.
Media Presentations
The analgesic role of sequential oxygen therapy in EDS.
Mast cell activation disorders: common phenotypes and potential treatments.
The place of Physical Medicine and Rehabilitation (PRM) in the management of EDS/HSD.
For more information, read the MATFLIX Blog here or listen to The Maternity & Midwifery Hour podcast here.
Review the pregnancy guidelines here: https://doi.org/10.1371/journa. Pezaro S, Brock I, Buckley M, Callaway S, Demirdas S, et al. (2024) Management of childbearing with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders: A scoping review and expert co-creation of evidence-based clinical guidelines. PLOS ONE 19(5): e0302401.