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diagnosis

Ehlers-Danlos syndrome

Diagnosis

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.

Videos about Ehlers-Danlos syndrome

Books about Ehlers-Danlos syndrome

book

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.

Podcasts about Ehlers-Danlos syndrome

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