Download or read book Writing about My Health Journey with Ehlers Danlos Syndrome written by E. D. S. Zebra EDS Zebra Books and published by . This book was released on 2020-01-24 with total page 100 pages. Available in PDF, EPUB and Kindle. Book excerpt: Writing About My Health Journey with Ehlers-Danlos Syndrome: College Ruled Notebook (EDS Zebra Awareness Ribbon Cover) If you or someone you know is living with Ehlers-Danlos Syndrome and find writing to be a therapeutic activity, you'll love this notebook. It's perfectly sized to fit in a bag or carry with you from the doctor's office to bed. Features: 100 premium white pages matte soft cover college ruled pages Suggested Uses: journal therapy notes from doctor visits gift for individuals living with EDS gift for rheumatologist, nurse, or therapist

Download or read book Journey to Health written by Mysti Reutlinger and published by CreateSpace. This book was released on 2014-05-10 with total page 70 pages. Available in PDF, EPUB and Kindle. Book excerpt: For years, unanswered questions about Mysti's health left her feeling isolated. Her closest family and friends didn't grasp how agonizingly painful each day had become. In 2013, a door was unlocked when Mysti was diagnosed with Ehlers Danlos Syndrome, a connective tissue disorder. Hopeful for treatments that would reduce her pain, Mysti was crushed as each medication left her further and further away from living the life of her dreams. Bedridden for all but a few hours each day, Mysti contemplated how life would be better without her alive. In a leap of faith, Mysti not only found the will to live, she did it all without being held captive my medications and doctor appointments. Journey to Health is a real look at what battling disabling diseases does to a person and provides details into Mysti's personal plan that now has her living life in ways once deemed impossible. Journey to Health: A Holistic Approach to Ehlers Danlos Syndrome is a must-read for anyone battling any chronic disease. Mysti Reutlinger expresses her mental and emotional battle alongside the physical struggles, leading the way to open the conversation about how chronic diseases are mismanaged and where family, friends, and co-workers can step in and help. To learn more about Ehlers Danlos Syndrome, visit ednf.org, ehlersdanlosnetwork.org, or rarediseases.org.

Download or read book Living Healthy with Ehlers Danlos Syndrome written by Dr Richard Taylor and published by Independently Published. This book was released on 2022-10-28 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: LIVING HEALTHY WITH EHLERS DANLOS SYNDROME Encompasses everything including acknowledging clinical signs and acquiring early assessment to living with the circumstance on a regular schedule, this complete guide to living with and managing Ehlers-Danlos Syndrome has been reviewed and updated comprehensively in this widely available manuscript. Dr Richard and some of his colleagues, who have been diagnosing patients with this disorder, looks at how it affects individuals and discusses types, causes, management, treatment, physical and psychological elements, and how it broadly impacts our ways of life. This publication is a necessity for everybody who suffers, or individuals wanting to know more about the condition, Ehlers-Danlos Syndrome, and is willing to self educate himself/ herself about everything required to have a full life with this difficult illness. It will also be of interest to their family and friends, and professionals dealing with the type EDS.

Download or read book Ehler Danlos Syndrome Guide written by Justin Allen and published by Independently Published. This book was released on 2024-02 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: Ehlers-Danlos Syndrome Guide is your comprehensive companion to navigating life with EDS. This empowering guide provides in-depth insights into understanding the condition, managing physical health, prioritizing mental well-being, and fostering a fulfilling lifestyle. From personalized care plans to building a supportive network and pursuing passion, this book offers practical strategies for individuals, caregivers, and healthcare professionals. Written with compassion and expertise, the guide aims to empower those affected by Ehlers-Danlos Syndrome to thrive and find joy in their unique journey. Discover resilience, embrace knowledge, and live life to the fullest with this essential guide.

Download or read book Our Stories of Strength written by Kendra Neilsen Myles and published by . This book was released on 2016-10-20 with total page 214 pages. Available in PDF, EPUB and Kindle. Book excerpt: This listing is for the 7x10 full-color version of the paperback book. An inspirational collection of stories, filled with devastation, heartbreak, triumph, and strength as written by those affected by different types of Ehlers-Danlos syndrome. EDS is a group of heritable connective tissue disorders that can cause a wide variety of symptoms throughout different body systems; each unique in presentation to the individual. The variety of symptoms and presentations proves challenging to the medical community in diagnosing and treating patients; many of whom are misdiagnosed and suffer as a result. EDS has been commonly viewed as just Benign Joint Hypermobility Syndrome (BJHS/JHS) or Hypermobility Syndrome (HMS). Based upon recent research, the prevalence of EDS exceeds current estimates. Kendra Neilsen Myles founded Sisters Media, LLC with core values of giving back and providing an outlet to those willing to share their stories through submissions in the Our Stories of Strength anthology series. Sisters Media, LLC recognizes that it is through opening doors to needed conversations and sharing stories of strength, determination, and perseverance that we are able to facilitate positive changes to the way we live and help shape perceptions of those around us, as well as in the medical community. We are #Stronger2Gether."

Download or read book Our Stories of Strength written by Kendra Neilsen Myles and published by . This book was released on 2015-05 with total page 222 pages. Available in PDF, EPUB and Kindle. Book excerpt: An inspirational collection of stories, filled with devastation, heartbreak, triumph, and strength as written by those affected by different types of Ehlers-Danlos Syndromes. "These are stories of hope and resilience, of strength under adversity, of self-reliance and new-found sources of support. They offer one core message to all who suffer from the diverse and difficult manifestations of EDS: You are not alone." - Dr. Clair Francomano, MD "Ehlers-Danlos Syndrome is another form of the human body. Just as there are tall people, short people, dark skin colored people, and light skin colored people, each with their own set of medical issues - similarly there are hypermobile people and not so hypermobile people who have different medical issues. Our understanding of EDS has improved, but we still have a lot of work to do. While the medical world works on understanding Ehlers-Danlos Syndrome, people with EDS have provided us with stories of courage and ingenuity. These stories give others and doctors the strength to find solutions." - PRADEEP CHOPRA, MD "As a physical therapist who works with many patients suffering from EDS, I've seen firsthand how isolating and frustrating EDS can be. Along with a more knowledgeable medical field, what these patients need most is an understanding that they are not alone and to be given hope. 'Our Stories of Strength' provides both community and hope and will be just as effective as any medication or exercise." - CHRISTOPHER GNIP, PT, DPT EDS is a group of heritable connective tissue disorders that can cause a wide variety of symptoms throughout different body systems; each unique in presentation to the individual. The variety of symptoms and presentations proves challenging to the medical community in diagnosing and treating patients; many of whom are misdiagnosed and suffer as a result. EDS has been commonly viewed as just Benign Joint Hypermobility Syndrome (BJHS/JHS) or Hypermobility Syndrome (HMS). Based upon recent research, the prevalence of EDS exceeds current estimates. Kendra Neilsen Myles and Mysti Reutlinger founded Our SOS Media, LLC with core values of giving back to non-profit organizations, creating jobs for people living with invisible and chronic illnesses, and providing an outlet to those willing to share their stories through submissions in the Our Stories of Strength anthology series. Our SOS Media, LLC recognizes that it is through opening doors to needed conversations and sharing stories of strength, determination, and perseverance that we are able to facilitate positive changes to the way we live and help shape perceptions of those around us, as well as in the medical community. We are stronger together."

Download or read book Vascular Ehlers Danlos Syndrome the Journey Begins written by M. J. Smith and published by Createspace Independent Publishing Platform. This book was released on 2016-08-25 with total page 208 pages. Available in PDF, EPUB and Kindle. Book excerpt: In one single moment, everything can change. What lurks inside the deepest depths of David Malarky threatens his entire existence.... Vascular Ehlers-Danlos Syndrome: The Journey Begins charts the story of David Malarky as he uncovers a truth that has gone undetected in his family for generations. An unknown monster with the power to take a life in the blink of an eye. As David unmasks the savage beast within, he must come to terms with the consequences of being diagnosed with a rare genetic disorder. With little help and little hope, he must overcome and fight back in the challenge to stay alive. The journey begins.....

Download or read book My Eds Journey written by Bradley Tinkle and published by . This book was released on 2012-06-01 with total page 100 pages. Available in PDF, EPUB and Kindle. Book excerpt: Individuals with EDS have a defect in their connective tissue, the result of faulty collagen. Now a world-renowned expert and clinical physician for EDS offers patients with this complex disorder a way to organize and centralize their medical data in a way that best serves patients and their healthcare providers.

Download or read book Holding It All Together When You re Hypermobile written by Christie Cox and published by Journey2joy LLC. This book was released on 2022-07-28 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: How to Deal - and Heal - for those with Rare Chronic Illness like EDS Tired of being told there's no name or treatment for your illness? That it's all in your head or that your pain can't be real because you're too young/old/pretty/bright/healthy/normal to have a chronic disorder? What if instead there was someone who knew what you were going through and could teach you strategies for coping with rare chronic illness? This is not a false hope. You can turn pain into possibility with this life-changing book that can help everyone with elusive hypermobile Ehlers Danlos Syndrome (hEDS) - from those newly diagnosed to those who have suffered in silence for decades. Wherever you are on your journey navigating the complexities of chronic illness, you're not alone. In Holding It All Together When You're Hypermobile, Christie Cox explores not only the physical effects of hEDS but its emotional impact as well. As a fellow patient and medical rarity, known to doctors as zebras, she's experienced her body's betrayal and suffered through the myriad complications stemming from this disease. But she's also found a way out from the depths of this life-altering disorder with wisdom you can turn into hope. As a self-advocacy guide, she offers practical, no-nonsense advice about living with chronic illness and the concrete steps you can take to achieve a new normal. In her book, you'll discover... A healing prescription for the miracle of the modern mindset A look at the latest scientific research on the edge of answers Q&A interviews with expert doctors and advocacy groups Guidance for how to help loved ones better understand hEDS Christie's own inspiring story of how she came to live her best life Lessons, questions and quotes to inspire your search for answers Holding It All Together When You're Hypermobile gives you the tools and resources you need to get back to living the life you want. Reading it will not only boost your confidence but empower you to change your life for the better. To learn more about Christie's book, visit www.holdingitalltogether.com If you want to learn more about Christie's advocacy work, visit www.journey2joyous.com

Download or read book Living Life to the Fullest with Ehlers Danlos Syndrome written by Pt Kevin Muldowney and published by . This book was released on 2015-07-17 with total page 400 pages. Available in PDF, EPUB and Kindle. Book excerpt: "This book was written to teach people with Ehlers-Danlos Syndrome (EDS) how to systematically progress through an exercise program to allow their muscles to support many joint subluxations commonly associated with this genetic disorder. This will allow people living wih EDS to have less pain throughout their body."--Back cover.

Download or read book Yet Will I Praise Him Living and Parenting with a Chronic Illness written by Hannah Wingert and published by Ambassador International. This book was released on 2020-11-17 with total page 131 pages. Available in PDF, EPUB and Kindle. Book excerpt: Motherhood can often feel overwhelming and isolating, but for moms with a chronic illness, those feelings are often intensified. When your life is a constant battle with pain, fatigue, and isolation, it's easy to lose sight of any joy in your life. Wife and mother Hannah Wingert knows this all too well. After finally being diagnosed with a chronic illness following the birth of her fourth child, Hannah has had to come to terms with her diagnosis and to learn to be a wife and mother in the midst of her invisible illness. In her inspirational book, Yet Will I Praise Him, Hannah opens up candidly about her own struggles of living and parenting with a chronic illness. She will help you understand: -how to use your chronic illness to grow in your faith, -how to balance your marriage and parenting, and -how to live each day with hope so you can not only survive the challenges you face, but also thrive. Hannah covers everything from the tough questions such as "Why doesn't God heal me?" to "Why doesn't my husband 'get it?'" She also provides savvy advice and practical tips she's learned along her journey. Though Yet Will I Praise Him is written by a mom for moms, it also covers information such as how the five stages of grief work when you have a chronic illness and what not to say to a parent with a chronic illness, making it beneficial for anyone who has a loved one who lives with a chronic illness.

Download or read book Never Bet Against Occam written by Lawrence B. Afrin and published by Sisters Media, LLC. This book was released on 2016 with total page 480 pages. Available in PDF, EPUB and Kindle. Book excerpt: In 2008 Dr. Afrin started coming to understand that a newly recognized type of mast cell disease, now called mast cell activation syndrome (MCAS), was the underlying diagnosis in many patients he was seeing who were each suffering large assortments -- quite different from one patient to the next -- of chronic multisystem inflammatory illnesses of unclear cause. Dr. Afrin soon gained experience that MCAS is far more prevalent than the only mast cell disease previously known to medicine (the rare disease of mastocytosis) and that most MCAS patients, once accurately diagnosed, can eventually find significantly helpful medications targeted at the disease. The frequency and magnitude of the improvements Dr. Afrin has seen -- even the relief that comes from finally having a unifying diagnosis other than "psychosomatism" -- have spurred him to focus in this area, not only tending to the needs of his patients but also pursuing research to advance our understanding of the disease and helping to educate other professionals who in turn can help even more of the many people who have long been suffering not only the symptoms of the disease but also the natural concern of not understanding why one would be so "unlucky" to have acquired so many medical problems. As it turns out, such patients are not so unlucky and truly have just one root issue (and a very common one at that), which has the biological capability to develop, directly or indirectly, into most or all of their previously diagnosed problems. There is a great deal yet to learn about this, but even with just the present very limited understanding, the opportunity to diagnose and help patients with MCAS seems to be enormous and Dr. Afrin felt a description of the disease, written for the general public, might help lead some MCAS patients on a journey to diagnosis and improvement sooner rather than later. Dr. Afrin hopes this book will help people who might have, or do have, MCAS. A portion of the proceeds of purchases of this book will go to support research and education in this area.

Download or read book A Guide to Living with Hypermobility Syndrome written by Isobel Knight and published by Singing Dragon. This book was released on 2011 with total page 242 pages. Available in PDF, EPUB and Kindle. Book excerpt: People with Hypermobility Syndrome (HMS), including Ehlers-Danlos type Hypermobility Syndrome, have a larger range of joint movement than is typical, which can cause pain and fatigue despite an outward appearance of good health. This book is the complete guide to living with and managing HMS, and ultimately enjoying a fulfilling life. The book covers everything from recognising symptoms and obtaining initial diagnosis to living with the condition on a daily basis and managing its negative effects. The author, who has HMS herself, looks at how the condition affects children and adolescents, before moving on to explore pain management (including the use of physiotherapy, pilates and a selected range of complementary health therapies), pregnancy, physical and psychological aspects of the condition, and how it widely affects dancers and other performance artists. Wider conditions that encompass Hypermobility Syndrome are also touched upon, including Fibromyalgia and IBS. This book will be a must for anybody who suffers, or suspects they might be suffering from, Hypermobility Syndrome. It will also be of interest to their families and friends, and professionals working with the condition.

Download or read book Too Flexible To Feel Good written by Celest Pereira and published by Victory Belt Publishing. This book was released on 2021-10-12 with total page 530 pages. Available in PDF, EPUB and Kindle. Book excerpt: Are you overly flexible or double-jointed? Perhaps you are the clumsy and tired person in your group of friends, often nursing an injury of some sort. If you are nodding in agreement with raised eyebrows and a knowing smirk on your face, then there is a chance you are hypermobile. Hypermobility affects a whopping 10 to 25 percent of the population (meaning it’s more common than being left-handed, standing over six feet tall, or having a third nipple), and it can cause symptoms ranging from minor discomfort to debilitating pain. Hypermobile people’s bendiness and tendency toward anxiety often lead them to yoga, where they find that they are at last praised for their physical ability and given tools to manage their hypersensitivity. However, the way yoga is taught frequently leaves this population susceptible to severe injuries, and they end up being told by medical professionals to avoid yoga. In this epic new book, fitness experts Adell Bridges and Celest Pereira redefine how to manage hypermobility, providing a practical roadmap that will enable you to harness your bendiness and feel fantastic. They reinforce the importance of stability, correct posture, and a healthy lifestyle, showing how, if managed properly, hypermobility is not debilitating but a superpower that you can use to live an extraordinary life. Too Flexible to Feel Good teaches you how to adapt your everyday habits such as your biomechanics and your diet to support and nourish your flexible body. This book also features: • Practical tips on how to hold your body for optimal results during training • Tools to help build awareness of your joint position in everyday life • Strategies for busting anxiety • Exercises that can improve your biomechanics • Diet and sleep considerations Too Flexible to Feel Good is also an invaluable resource for yoga teachers, fitness instructors, and medical professionals, helping them develop a deeper understanding of how best to help this population.

Download or read book Disjointed written by Diana Jovin and published by . This book was released on 2020-03-31 with total page pages. Available in PDF, EPUB and Kindle. Book excerpt: Disjointed is for patients with hEDS/HSD and the physicians who treat them. hEDS/HSD is an underrecognized, complex, multisystemic disorder, with the silos of healthcare's specialties often working against effective and efficient treatment. With 21 specialist & 6 resource chapters, Disjointed brings together physician, patient, and parent perspectives to support the goal of earlier and more complete intervention.

Download or read book Hypermobility Without Tears written by Jeannie Di Bon and published by Independently Published. This book was released on 2019-05-09 with total page 144 pages. Available in PDF, EPUB and Kindle. Book excerpt: Hypermobility Without Tears is a step-by-step guide to help people with hypermobility and Ehler-Danlos Syndrome (EDS) learn how to move pain-free and effortlessly. A movement therapist and hypermobility specialist with over a decade of education, research, client practice and Pilates teaching, Jeannie is an expert in the field of movement. Her own experience of hypermobile EDS, leaves her uniquely qualified to guide people with hypermobility and EDS back to movement and a 'no pain, no strain' lifestyle. Having suffered through years of misdiagnosis and pain, Jeannie truly understands the 'hypermobile body' and her book offers empathetic guidance on how to listen to the body and learn to move without pain. Hypermobility Without Tears is arranged into six sections based on Jeannie's key principles of pain-free movement for the hypermobile body: breath, relaxation, proprioception, stability, balance and posture.

Download or read book The Healing Journal written by Emily Suñez and published by The Experiment. This book was released on 2022-02-22 with total page 145 pages. Available in PDF, EPUB and Kindle. Book excerpt: Write to feel better—with 50 positive affirmations, writing prompts, and soothing illustrations inspired by nature to help people overcome the emotional toll of chronic or invisible illness