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 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. (Definitions taken from the Ehlers-Danlos National Foundation website: www.ednf.org). 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.
And, now, to the project…
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 will contain 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 doctor’s visit. It’s generated in a way that can get information in the doctor’s hands most immediately so that the focus is on the patient and resolving issues during the appointment- not in sifting through reams of notes.
In addition to creating a beautiful printed version that includes a cover with the EDS zebra mascot along with a place to write in the owner’s name of the journal (we recommend a Sharpie®!), a FILLABLE PDF version will also be created for those that prefer to keep their information electronically.
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.
The timeframe for this project is fast-paced. We would like to launch the “My EDS Journal” at the 2012 EDNF Conference, which is in the Cincinnati area (Northern Kentucky) in August. Given how much this has already been organized and Left Paw Press’ experience with book production, this is VERY doable for this get-it-done team!
Following are the sections currently slated to be 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
The journal itself will be published and managed by Left Paw Press, the publishing imprint for Dr. Tinkle’s other best-selling books on EDS: “Joint Hypermobility Handbook: A Guide for the Issues & Management of Ehlers-Danlos Syndrome Hypermobility Type and Hypermobility Syndrome” (2010) and “Issues and Management of Joint Hypermobility- A Guide for Ehlers-Danlos Syndrome Hypermobility Type and Hypermobility Syndrome” (2008).
As with all Dr. Tinkle’s publishing endeavors, this effort is being made to better serve his patient population. The emphasis is not on making a profit. That being said, hard cover books that are the size of a textbook can be quite expensive to produce. Therefore, this project is being put on IndieGoGo to both a) test the viability of such a project for the EDS population and b) to assuage the upfront expenses. The funding budget will cover the following development areas (estimated). Please note that these costs are less than industry averages. We’ve been able to assemble some amazing resources for this project.
$ 500.00 Cover Design
$ 800.00 Interior Pages Designs
$ 300.00 Fillable PDF creation
$1500.00 Layout
$ 100.00 Obtaining the ISBN/barcode
$ 100.00 Listing in Bowkers
$4000.00 Initial Print Run
$ 200.00 File Upload Fees for Printer
$1500.00 Shipping
$1000.00 Fees
$10,000.00 TOTAL
Note: Does not include marketing
