Available in fillable PDF version (comes directly to your inbox as a download) $27.00

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.

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About “My EDS Journey” medical history and personal journal

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 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.

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.

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Following are the sections currently 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

 

Available in fillable PDF version (comes directly to your inbox as a download) $27.00

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The “My EDS Journey” journal was introduced as a concept in Indiegogo. Left Paw Press would like to thank the following patrons for making this book a possibility and validating its need to the community.

Linda Amtsfield

Kristine Bacon

Kara Moorhouse Bell

Leslie Bennet

Siobhan Ni Bhroin

Jo Braley

Serena Brejcha

Ricky Buchanan

Christine Cardwell

Angela Caviness

Marissa Chalk

Melissa Chapin

Beau Clymer

Gary Cullen

Barbara Davis

Danielle Davis

Melissa Deer

Dr Kira Draper

Sharon Ethridge

Pam Fenner

Dena Ferner

Cheryl L Grice

Jack Hallett

Erin Herold

Sarah Herr

Tracy Horstmann

Joanie Horvath

Sherry Hunt

Cheri Jacobson

Tom Janicik

Monica Jaramillo

Sherri Johnson

Betty Kadel

Danee Kaplan

Megan Karanfil

Jacquie Klockow

Kandace Knudson

Andrew Kothen

Kylie Lang

Carole Larson

Christine Leyden

Del-Lor Lisitano

Meg Little

Elizabeth Lovett

Erin Martinelli

Nicola McAteer

Melody Megenity

Laurie Vander Mey

Suzanne Moore

Karin Murphy

Sabrina Neeley

Sue Newson

Susan Nieland

Kurt Ostergaard

Jacqui Peet

Robin Pifer

Renee Pinkard

Margaret Pearson Pinkham

Pam Pitillo

Brenda Poissant-Rian

Lesa Rhoton

Emma Richardson

Richard Riemenschneider

Stephanie Reinke Richter

Jules Robinson

Kathy Sanders

Veronique Schmid

Kelli Scott

Cathy Shehan

Linda Simmons

Robert Sones

Yvonne Spitek

Carol Steegman

Linda Strickler

Rebecca Strong

Julie Tremp

Graham Venn

Jodie Watson

Kristen Wright

Janet Wurtzler

Cindy Yorio

Lauren Yorio

Multiple Anonymous Supporters

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