Essential Tools for Managing EDS and Chronic Illness

The digital landscape offers a diverse array of technology tools designed to assist individuals with Ehlers-Danlos Syndrome (EDS) and chronic illnesses. From innovative apps that streamline symptom tracking and treatment to educational books recommended by our community, we are committed to sharing the top resources that have proven helpful. The below sections will detail the most effective apps and books, as contributed by our collaborative community, to guide and enhance your daily management of EDS.

Books Helpful for EDS Patients

Growing your library of EDS information and resources can take a long time as you go through differing symptoms and treatment needs over time. We gathered a few of our favorite books for your consideration and appreciate notice of ones to add.

Suggested Reading for Newly Diagnosed EDS Patients

A curated starter bookshelf for understanding EDS, POTS, and MCAS from both medical and patient perspectives

1. Disjointed: Navigating the Diagnosis and Management of Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders

Editor: Diana Jovin

This groundbreaking, expert-authored medical reference features chapters from over 30 clinicians across specialties—genetics, neurology, cardiology, GI, PT, OT, psychology, and more—each writing on how they evaluate and manage patients with hypermobile EDS (hEDS) or Hypermobility Spectrum Disorder (HSD). While the book reflects the fragmented nature of siloed care, it’s an invaluable tool for understanding how each discipline approaches connective tissue disorders.

Ideal for patients wanting deep dives into each specialty’s view of hypermobility and how multidisciplinary care might (or might not) come together.

Available from: Amazon, Barnes & Noble, nd everywhere books are sold

2. Holding It All Together When You’re Hypermobile: Achieving a Better Life Experience with Ehlers-Danlos Syndrome

Author: Christie Cox

A heartfelt, practical guide written by an EDS patient and advocate. This book offers compassionate insights for newly diagnosed individuals trying to survive the confusing and exhausting diagnostic journey. Topics include: how to track symptoms, build a care team, regulate energy, and emotionally cope with the life-changing impact of chronic illness.

A comforting companion written in plain language—offering both validation and tools for rebuilding life with EDS.

Available from: Amazon, Bookshop, and major online retailers.

Suggested Library to Build for EDS Patients

One of the best compilations of trifecta and EDS related books was created by Karina Strum at Chronic Pain Partners to raise EDS awareness and offer resources to patients.

 

Apps to Try, Especially for EDS

Healthcare is going digital, and AI is likely to change the landscape of the future. But for now, you might be enjoying easy access to your online medical records and clinic visit notes, but there’s much more technology available to assist with the challenges of chronic illness.

We all understand that chronic diseases are prevalent according to the Centers for Disease Control and Prevention (CDC), affecting roughly 120 million Americans, taking a large toll on public health in terms of costs and quality of life. The CDC estimates that chronic diseases account for 70% of U.S. deaths and 75% of U.S. health care spending.

Many mobile apps are bridging a care gap between doctors and patients, where technology can aid connection and data sharing with evidence-based information and tools for logging disease-related data. These advances can trace trends and patterns that can inform future treatment and management strategies.

Digital health apps are on the rise. According to a 2017 report by the IQVIA Institute, there were 318,500 mobile health apps that year—a number that was growing by 200 each day. Of these, 40 percent are dedicated to the management of a range of illnesses, most commonly heart disease, diabetes, musculoskeletal conditions, and mental health issues such as anxiety, depression, autism, ADHD, and Alzheimer’s. And studies suggest they work, alleviating the burden on the health care system while boosting patients’ ability to live better with illness.

One challenge facing digital health apps is that they are difficult to sell directly to consumer patients, making this group an unlikely source of customers because many are already burdened with expensive medical bills and disability-related loss of income. It’s also noted that typical apps we might spring for are designed for leisure or entertainment, while most don’t see managing chronic illness as leisure, but a necessity or a chore. As a result, many digital health apps for managing chronic disease have not yet been widely adopted, despite the growing numbers of chronic pain and illness.

There are a few good ones to leverage in various ways to enhance and inform the patient-provider relationship. Plus, the tracking helps you and your doctor understand your patterns and trends with data to back you up – and hopefully not get gaslit. We curated a list of the top 25 apps that we thought were beneficial for EDS patients and those with chronic illnesses, focusing on symptom tracking, mood management, medication management, movement, deploying coping skills and more:

1. The Zebra Club – Paid: Offers tailored movement therapy sessions specifically designed for EDS and hypermobility by a fellow patient who became a physical therapist, Jeannie DiBon.
2. Guava – Free/Premium: A newer app on the market, it provides personalized health insights and data management securely, designed for chronic illness management and enhancing wellness practices.
3. MyFitnessPal – Free/Premium: Long-time app to help track diet, hydration and exercise, important for managing related health conditions.
4. Medisafe – Free: Aids in medication management and adherence with reminders and tracking.
5. Bearable – Free/Premium: Comprehensive symptom and mood tracker with a focus on daily health management.
6. Symple – Free: Simple symptom tracking and journaling, integrates with Apple Health.
7. CareZone: Free: Designed to help users manage their health information and access health services, particularly useful for people with complex health needs.
8. Health Storylines – Free: Allows creation of a personalized health journal with symptom tracking and community to develop self-care practices.
9. PillPack – Free: Alternative online pharmacy services through an app for managing medications and refills with free shipping to your home.
10 My Pain Diary – Paid: Enables users to record and track chronic pain and its triggers and share data with doctors.
11. MyTherapy – Free: Combines medication management and RX reminders with a refill reminder app to help people stick to their prescriptions and supplements plus patient diary features.
12. Flaredown – Free: Tracks symptoms, triggers, and treatments for chronic pain, providing insights and trends with charts showing how symptoms change over time.
13. Calm – Paid: Robust meditation and relaxation exercises to manage stress and anxiety including sleep stories, affirmations and more. Headspace or Insight Timer – Provides free guided meditations and mindfulness exercises.
14. HeartWatch: Paid: An app that gives users a comprehensive view of their heart rates throughout the day.
15. SuperBetter – Free/Premium: Gamifies mental health strategies for improvement and resilience building and allows groups or private game challenges.
16. Talkspace – Paid: Offers various types of virtual therapy or self-directed therapy (accepts insurance) and helps connect users with therapists for mental health support online.
17. Sleep Cycle – Free/Premium: Analyzes sleep patterns to improve sleep quality.
18. Curable – Free/Premium: Offers education and mind-body techniques for chronic pain management.
19. Find Me Gluten Free – Paid: Helps user locate gluten free restaurants and chains by location.
20. Dateability: Paid: Inclusive dating app for the disabled and chronically ill communities.
21. Wheelmap – Free: Maps accessible places for those using wheelchairs or with mobility issues.
22. Visible: Free/Premium: An app designed for people living with Long Covid and/or chronic fatigue that helps with pacing and energy management using HRV.
23. My Medical ID – Free/Premium: Stores medical information, useful in emergencies and for routine care.
24. Ada – Free: Simple symptom checker to help you find answers on symptoms and review possible causes.
25. Healp: Free: A health social network where you can meet people with the same conditions and browse community resources, find healthcare solutions and clinical trials.