If you have Ehlers-Danlos syndrome (EDS), there’s a good chance you’ve felt alone at some point during your health journey. EDS can be a hard one to explain to people, and it’s a little bit complicated. Basically, EDS is classified into 13 different types that affect connective tissue—including cartilage, bone, fat, and blood. All types of EDS are caused by faulty genes that produce weak or inadequate amounts of collagen, which is a critical protein in connective tissue. Each condition is defined by its signature features and where symptoms show up in the body. The most common type is hypermobile Ehlers-Danlos syndrome (hEDS), which is characterized by super-flexible, unstable joints, and soft, stretchy skin that’s easily bruised. Other symptoms include fatigue, pain, torn ligaments and tendons, and dislocated joints. EDS is diagnosed based on family history, physical exam, imaging, genetic testing, and sometimes biopsy. Managing your EDS will depend on your type and symptoms, but at the very least, you’ll want to protect your joints from damage. Physical therapy to strengthen supportive muscles can help, as can using braces to support joints. It’s also important to protect your skin from bruising and tearing. Take extra vitamin C to help prevent bruising and use sunscreen and mild soaps. Some types of EDS, like vascular Ehlers-Danlos syndrome (vEDS), can be life threatening—if, for example, it leads to blood vessel tears. If you are diagnosed with EDS, your practitioner should walk you through all the specifics of your type, but make sure to ask questions if you need more clarity. It’s likely that you didn’t even think about your connective tissue before now, and it’s totally normal to feel a little lost when you get a diagnosis like this. But never fear: your WanaFam understands you, and we’re all getting smarter about our conditions alongside each other.
Recent posts about Ehlers-Danlos syndrome
Does anyone with EDS (or otherwise) have bladder issues? I’d like to talk to anyone who also deals with that, it’s embarrassing for me to talk about and I’ve never brought it up to a doctor bc of that, I’m trying to get over that so I can hopefully seek treatment and get some relief, and I think talking to other people who deal with it might help
This is my first day in a month or so where I just can’t get out of bed. I can walk to the bathroom (it’s right outside my room thank goodness) I am just so fatigued today. I am in a lot of pain but I am not sure what is flaring. Lol. I have Ehlers Danlos Syndrome, Finromyalgia, POTS... I feel really alone because as supportive as my friends are, they don’t have any of these. (with the exception of one friend who has lyme and fibro). Does anyone else have days like these?
hey fam. I got some difficult news this week😞. Turns out I have EDS, Mast Cell Activation Syndrome, Fibromyalgia and now I am seeing another Dr about possibly POTS and Small Fiber Neuropathy. I already knew about the fibro and painful joints but these new diagnostic realities have me a bit shaken. I could really use some love and assurance from you guys! Tips and treatment suggestions welcomed 🥰
Newbie here. I have EDS and Fibromyalgia. I work at least 40 hours a week and am barely able to function. People at work can’t seem to understand what an invisible illness is and are shocked when they happen to glance at my medicine bag (emergency and afternoon meds I take to work). I am in search of a place of understanding because everyday is a struggle and I hope I have found it here.
Videos about Ehlers-Danlos syndrome
Books about Ehlers-Danlos syndrome
Living Life to the Fullest with Ehlers-Danlos Syndrome: Guide to Living a Better Quality of Life While Having EDS
Kevin Muldowney, MsPT has been treating people with Ehlers-Danlos Syndrome since 2005. As a physical therapist, he has developed an exercise protocol to help stabilized the many joint subluxations/dislocations associated with this genetic disorder. This book is intended for the person diagnosed with EDS to both inform them about the healthcare team needed to properly treat them as well as to guide both the physical therapist and their patient with EDS through the Muldowney exercise protocol. This book will cover such topics as: how joints sublux in this population, how to find the right physical therapist, how to exercise without injury and what physical therapy techniques works best. By the end of this protocol people with EDS should be better informed about what is going on with their body and how to make it better.
Joint Hypermobility Handbook- A Guide for the Issues & Management of Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome
As a followup to his previous best-selling book, "Issues and Management of Joint Hypermobility: A Guide for the Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome," Dr. Tinkle has created this handbook with several contributors to expand insights into the understanding and management of Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome. Dr. Tinkle has received many accolades for his ability to take a complex condition and make it understandable in everyday language: "...provides a wealth of information about the natural history, and physical and medical management... It should be of great value to patients." - The American Journal of Medical Genetics Reader comments... "...a useful tool in helping me obtain the type of care I need to manage my disorder..." "This book is simple but not oversimplified. It is an excellent basic resource, giving a clear, concise, and useful overview for those (like myself) who live with hypermobility." "Super book for EDS! Finally a book that everyone can understand." "...thoroughly explores the problems associated with EDS-HM. It is a relief to realize that it is not just me..." "...a tremendous service for the health care community and the families and friends of those diagnosed or not yet formally diagnosed folks with EDS-HM... joy and clarity in reading the very 'easy to read' text chapters detailing out the impact of EDS-HM..." In addition to the weatlth of positive reviews, Dr. Tinkle's previous book on the same subject was a best seller in several categories: • Genetics • Medical Genetics • Orthopedics • Family and General Practice Brad T. Tinkle, M.D., Ph.D., is a clinical and clinical molecular geneticist at Cincinnati Children's Hospital Medical Center (CCHMC). He specializes in caring for individuals with heritable connective tissue disorders such as Ehlers-Danlos syndromes, Marfan syndrome, osteogenesis imperfecta, and achondroplasia among the many.
A Guide to Living with Ehlers-Danlos Syndrome (Hypermobility Type): Bending without Breaking (2nd edition)
Covering everything from recognising symptoms and obtaining initial diagnosis to living with the condition on a daily basis, this complete guide to living with and managing Ehlers-Danlos Syndrome (Hypermobility Type - formerly known as Type III) has been revised and fully-updated in this accessible new edition. The author, who has the condition, looks at how it affects children and adolescents and explores pain management, pregnancy, physical and psychological aspects, and how it widely affects dancers and other performance artists. New material includes: changes in terminology information on how osteopathy and nutrition can help psychological approaches beyond CBT how to deal with professionals what to expect from support groups and rehabilitation programmes This new edition will be a must for anybody who suffers, or suspects they might be suffering from, Ehlers-Danlos Syndrome (Hypermobility Type) and provides everything needed to enjoy a fulfilling life with this complex condition. It will also be of interest to their families and friends, and professionals working with Hypermobility Type EDS.
Podcasts about Ehlers-Danlos syndrome
Invisible Not Broken, A Chronic Illness Podcast: Ehlers Danlos, Fibromyalgia, POTS & MCA Collect Them All
Med Stud Memoirs: Edhlers-Danlos Syndrome - Medical
Brian and Jarett explain the "need-to-know" medical content on Ehlers-Danlos Syndrome for any medical student, at a comprehension level most premedical students can understand.
Sickboy: Stretch Armstrong Disease (AKA Ehlers Danlos Syndrome)
You know how Mr. Fantastic can stretch and bend himself and help save the world? Yea...hyper mobility just ain't like that son. This week we sit down with Joanne during our visit to Vancouver, and although she is kicking some serious ass, learn about what it's like to be so hyper mobile that you're surgeon is #1 on speed dial. We dive into collagen, botox, bad knees, big headed surgeons, American health care BS and much much more!
Move Forward Radio: Living with Ehlers-Danos Syndrome
Victoria Graham attempts to go through each day with the positivity of a beauty pageant champion, which makes sense because she is one. But hidden behind that smile and positive attitude is almost constant pain. Victoria has Ehlers-Danlos Syndrome, or EDS, which affects her body’s connective tissues, causing dangerously flexible joints and fragile skin.
Sickboy: Slayer of Dragons, Mast Cells & Ehlers Danlos Syndromes
This week on Sickboy the guys sit down with an 18 year old Knight in shining armour. Literally. Danielle lives with a Mast Cell and Ehlers-Danlos syndrome but that doesn’t stop her from taking part in medieval battles. We dive into the world of L.A.R.P and Brian geeks out a little too much on World of Warcraft. Danielle reminds us of the importance of developing and seeking community in times of need. Oh, and one more thing a real life opera singer stops the studio for a show.