My Eds (Ehlers-Danlos Syndrome) Journey: Medical and Personal Journal Bradley Tinkle

ISBN: 9780982913246

Published: June 1st 2012

Hardcover

100 pages

Description

My Eds (Ehlers-Danlos Syndrome) Journey: Medical and Personal Journal by Bradley Tinkle

My Eds (Ehlers-Danlos Syndrome) Journey: Medical and Personal Journal by Bradley Tinkle
June 1st 2012 | Hardcover | PDF, EPUB, FB2, DjVu, audiobook, mp3, RTF | 100 pages | ISBN: 9780982913246 | 5.31 Mb

First, a bit about Ehlers-Danlos Syndrome (EDS)... Ehlers-Danlos (EDS) is a heterogeneous group of heritable connective tissue disorders, characterized by articular (joint) hypermobility, skin extensibility and tissue fragility.

There are six majorMoreFirst, a bit about Ehlers-Danlos Syndrome (EDS)... Ehlers-Danlos (EDS) is a heterogeneous group of heritable connective tissue disorders, characterized by articular (joint) hypermobility, skin extensibility and tissue fragility. There are six major types of EDS.

Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles, and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a glue in the body, adding strength and elasticity to connective tissue.

Those afflicted with EDS have very complicated medical needs with treatments that can be quite complex. Eighty to ninety percent of those afflicted with EDS are women and is prevalent in an estimated 1-3 percent of the overall population. Because EDS affects all areas of the body (all areas have connective tissue, after all), many people go years without proper diagnosis as they go from one specialist to another seeking treatment for specific body areas.

By the time a proper diagnosis is received, many EDS patients have long and varied medical histories, which is the reason for the creation of the My EDS Journey journal by Dr. Tinkle. Dr. Tinkle, a world-renowned expert and clinical physician for EDS, has worked with Left Paw Press on a concept for the My EDS Journal where patients with this complex disorder can organize and centralize their medical data- in a way that best serves this patient population and their healthcare providers.

Unfortunately, some patients come to EDS clinics with disorganized files of paper. As a result, time is needlessly spent on going through data. Dr. Tinkle sees over 600 patients a year specifically for EDS treatment and has carefully thought out the best way to contain this information. This is not just a typical journal with blank pages. Although it contains plenty of pages for personal reflection, it is also a journal that has been carefully thought out so that it will contain the pertinent information needed during a doctors visit. Its generated in a way that can get information in the doctors hands most immediately so that the focus is on the patient and resolving issues during the appointment- not in sifting through reams of notes.

While some of the information is typical medical information that is ideal to have written down anyway, it has been expanded to take into consideration the complex issues that Ehlers-Danlos patients deal with. Following are many of the sections included in the My EDS Journal: - Emergency Contact List - Doctor List - Allergy List - Medication List - Historic Data Pages - Joint Hypermobility Screening Questionnaire - Current Problems/Diagnosis Sheet(s) (a form to be filled out for each doctor visit/several included/can make copies from the book) - Review of Systems - Surgery History - Legal Information - Journal Pages - Disability Information - Resources Section



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