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Loosey the Connective Strength Mascot

As an exciting addition to the “Graceful Strength” book launch, we’re thrilled to introduce “Loosey,” a charming 6-inch stuffed Zebra, as a special companion for readers and supporters. This adorable plush represents the spirit of resilience and community that defines the Ehlers-Danlos Syndrome (EDS) journey. Zebras symbolize EDS, representing the unique and often surprising nature of the condition, and Loosey embodies this spirit with her soft stripes and comforting presence. Available as an add-on through Backerkit once the campaign ends, Loosey is not just a keepsake but a symbol of support and solidarity for those living with EDS and their loved ones. Adopting your own Loosey is a way to embrace and celebrate the strength of the EDS community and keep the message of hope and resilience close at hand.

Launch Party Tickets (Free Party!)

As we celebrate this book’s resilience and community spirit, we are excited to announce a May 1st Book Launch Party at the Brightwater Center in Woodinville, WA. This special event begins a new chapter for many individuals affected by EDS as they find guidance, understanding, and a shared voice in “Graceful Strength.”

The launch party will not only celebrate the release of this pivotal resource but also serve as a gathering for the community. Attendees will have the opportunity to explore booths from various healthcare providers, offering insights and services related to the management and understanding of EDS. This will be an invaluable opportunity for attendees to connect with experts, discover new resources, and engage with various aspects of care and support for EDS.

In addition to the provider booths, we are thrilled to host special guests who have been instrumental in the EDS community and the creation of this book. Their presence will provide inspiration and a sense of solidarity, highlighting the collective effort and dedication to understanding and advocating for EDS.

To ensure an enjoyable and comfortable experience, we will provide a light dinner, allowing guests to mingle, share stories, and build connections in a relaxed and welcoming atmosphere. This evening is not just a book launch; it’s a celebration of community, strength, and the journey towards empowerment.

Mark your calendars for this momentous occasion and join us in embracing the launch of “Graceful Strength: Living Resiliently with Ehlers-Danlos Syndrome.” Whether you’re an individual with EDS, a family member, a healthcare provider, or a supporter, this event promises to be an uplifting gathering, propelling us forward in our collective journey of understanding, advocacy, and resilience.

Contributors

Written by: Zoë Jorna-Jackson, MA-SSM
Cover Art by: Giusiana 
Interior Art by: Odessa Durante & Giusiana 
Editing by: Sharon Turner Mulvihill
Layout by: David Stansel-Garner
Provider Section: Susana Escobar MD, Sabrina Kimball ND, Virtaj Singh MD
Proofed by: Stacey Hoffman, Sarah Tompkins, JoAnn Keller CHT, Dr. Matthew C. Oseto, MD, MA, FAAOS, FAENS, Susana Escobar MD, Sabrina Kimball ND, Virtaj Singh MD, Vincent Santoro MD.

Outline (subject to change)

Graceful Strength: Living Resiliently with Ehlers-Danlos Syndrome

1.    Introduction
2.    Advocate With Grace
          a.    How This Can Help You
          b.    You Are Your Biggest Advocate
          c.    How to Advocate With Grace
          d.    Medical Gaslighting
          e.    Moving on From Being Gaslit
          f.    When Your Provider Can’t Help
          g.    It Isn’t Always Gaslighting 
          h.    Complex Patients and the Current Medical Model
          i.    Insurance Appeals
3.    Ehlers-Danlos Syndrome
          a.    Overview
          b.    Key Characteristics of EDS
          c.    Diagnostic Criteria
          d.    Beighton Score Sheet
          e.    Patient Actions to Alleviate Symptoms
4.    Grace in the Storm: Dayde’s Journey 
5.    Dynamic Disabilities: Navigating the Evolving Changes
          a.    Characteristics of Dynamic Disabilities 
          b.    Dynamic Disabilities and EDS 
6.    Comorbidities
          a.    Brain Fog and Fatigue
                    i.    Symptoms of Brain Fog
                    ii.    Symptoms of Fatigue
                    iii.    Diagnostic Considerations
                    iv.    Strategies to Help Individuals with Chronic Health Issues
          b.    Unfolding Strength: Lexie’s Triumph Over Ehlers-Danlos Syndrome 
          c.    Complex Regional Pain Syndrome (CRPS) 
                    i.    Types of CRPS 
                    ii.    Common Symptoms 
                    iii.    Diagnosis and Treatment 
                    iv.    Interventions 
          d.    ADD STORY – Gusianna
          e.    Craniocervical Instability (CCI)
                    i.    Symptoms of Craniocervical Instability
                    ii.    Diagnostic Criteria
                    iii.    Imaging and Testing for CCI
                    iv.    Patient Actions to Alleviate Symptoms
          f.    Dysautonomia/Postural Orthostatic Tachycardia Syndrome (POTS)
                    i.    Postural Orthostatic Tachycardia Syndrome (POTS) Overview
                    ii.    Symptoms of POTS
                    iii.    Diagnostic Criteria
                    iv.    Tilt Table Testing
                    v.    Patient Actions to Alleviate Symptoms 
          g.    Unbroken Spirit: Odessa’s Journey 
          h.    Gastroparesis
                    i.    Symptoms of Gastroparesis
                    ii.    Diagnostic Criteria
                    iii.    Lab Testing for Gastroparesis
                    iv.    Patient Actions to Alleviate Symptoms
          i.    Unseen Strength: Carters Resilient Journey 
          j.    Mast Cell Activation Syndrome (MCAS)
                    i.    Symptoms of MCAS
                    ii.    Diagnostic Criteria
                    iii.    Lab Testing for MCAS
                    iv.    Patient Actions to Alleviate Symptoms
          k.    Median Arcuate Ligament Syndrome (MALS) 
                    i.    Symptoms of MALS
                    ii.    Diagnostic Criteria
                    iii.    Lab Testing for MALS
                    iv.    Patient Actions to Alleviate Symptoms
          l.    Thoracic Outlet Syndrome (TOS)
                    i.    Types of TOS
                    ii.    Symptoms of TOS
                    iii.    Diagnostic Criteria
                    iv.    Testing for TOS
                    v.    Patient actions to alleviate symptoms
          m.    Resilience and Adaptation: Angi’s Journey Through Living With EDS 
          n.    Urinary and Pelvic Floor Dysfunction
                    i.    Symptoms of Urinary and Pelvic Floor Dysfunction
                    ii.    Diagnostic Criteria
                    iii.    Management and Treatment
7.    Pregnancy and Ehlers-Danlos Syndrome 
          a.    Pregnancy – Specific Challenges in EDS 
          b.    Musculoskeletal Concern in EDS Pregnancy 
          c.    Proprioception and Autonomic Dysfunctions 
          d.    Labour and Delivery in EDS  
          e.    Ergonomic Strategies When Caring for A Baby 
          f.    Criticisms and Misconceptions 
          g.    Navigating Criticisms 
8.    Supporting Chronically Ill Children 
          a.    Understanding the Diagnosis 
          b.    Managing Symptoms
          c.    Navigating the Healthcare System 
          d.    Emotional and Social Support 
          e.    Daily Life Adaptations 
          f.    Promoting Independence 
          g.    Family Dynamics
9.    Journey Through the Unseen: Peter and Lori’s Chronicle of Care 
10.    The Vital Role of Proper Nutrition
          a.    The Impact of Nutrition on Chronic Health Issues
          b.    Principles of Proper Nutrition for Chronic Health Issues
          c.    Nutritional Challenges in Chronic Health Management
          d.    The Holistic Approach to Wellness
11.    The Vital Role of Hormonal Balance
          a.    The Role of Hormones in Chronic Illness
          b.    Strategies to Maintain Hormonal Balance
12.    Overcoming Obstacles: David’s Triumph Over Chronic Illness 
13.    Maintaining a Positive Outlook on Life 
          a.    Accepting Your Reality
          b.    Embracing Self-Compassion
          c.    Finding a Support System
          d.    Setting Realistic Goals
          e.    Focusing on What You Can Control
          f.    Mindfulness and Stress Management
          g.    Finding Joy and Purpose
          h.    Seeking Professional Guidance
14.    Resilience and Adaptation: Xyla’s Journey Through Chronic Illness 
15.    How to Think About Your Energy
          a.    Spoon Theory
          b.    Matchstick Theory
16.    Resilience in the Face of Adversity: Shannon’s Journey
17.    The Vital Role of Spiritual Well-Being
          a.    Understanding Spiritual Well-Being
          b.    The Impact of Chronic Illness on Spirituality
          c.    Strategies for Nurturing Spiritual Well-Being
18.    Life After Diagnosis
          a.    How to Stay Mentally Strong
          b.    Mentorship
          c.    Psychiatric Care
          d.    Support Groups
19.    Giving Back
20.    Provider Section 
          a.    Patient-Centered Approaches in Chronic Care: Empowering for Better Outcomes
          b.    Diagnostic and Treatment Checklist 
                    i.    Understanding Hypermobility and Ehlers-Danlos Syndrome in Clinical Practice
                              1.    Beighton Scores and Hypermobility
                              2.    Recognizing Ehlers-Danlos Syndrome (EDS)
                              3.    Differentiating EDS from Similar Conditions
                              4.    Diagnostics and Treatments 
                    ii.    Navigating the Complexities of Dysautonomia in Clinical Practice
                              1.    Understanding Dysautonomia
                              2.    Diagnostic Approach
                              3.    Management Strategies
                              4.    Special Considerations
                              5.    Diagnostics and Treatments 
                    iii.    Understanding and Managing Mast Cell Activation Syndrome (MCAS)
                              1.    Understanding MCAS
                              2.    Diagnostic Approach
                              3.    Management Strategies
                              4.    Special Considerations
                              5.    Diagnostics and Treatments 
                    iv.    Navigating Complex Gastrointestinal Disorders: Gastroparesis, SIBO, IBS, and MALS
                              1.    Gastroparesis
                              2.    Small Intestinal Bacterial Overgrowth (SIBO)
                              3.    Irritable Bowel Syndrome (IBS)
                              4.    Median Arcuate Ligament Syndrome (MALS)
                              5.    Diagnostics and Treatments 
                    v.    Addressing Urinary and Pelvic Floor Dysfunction in Hypermobility Syndromes
                              1.    Understanding the Connection
                              2.    Diagnostic Approach
                              3.    Management Strategies
                              4.    Special Considerations
                              5.    Diagnostics and Treatments 
                    vi.    Understanding and Managing Craniocervical and Spinal Instability
                              1.    Craniocervical Instability (CCI)
                              2.    Spinal Instability
                              3.    Special Considerations 
                              4.    Diagnostics and Treatments 
                    vii.    Understanding and Managing Thoracic Outlet Syndrome
                              1.    Understanding Thoracic Outlet Syndrome
                              2.    Diagnostic Approach
                              3.    Management Strategies
                              4.    Diagnostics and Treatments 
                    viii.    Addressing Brain Fog and Fatigue: Clinical Perspectives and Management
                              1.    Understanding Brain Fog
                              2.    Understanding Fatigue
                              3.    Diagnostic Approach
                              4.    Management Strategies
                              5.    Special Considerations
                              6.    Diagnostics and Treatments 
                    ix.    Navigating Mental Health: Anxiety, Insomnia, and Autism
                              1.    Anxiety 
                              2.    Insomnia
                              3.    Autism Spectrum Disorder (ASD)
                              4.    Interrelation and Comprehensive Care
                              5.    Diagnostics and Treatments 
21.    About Us