Contacts, Resources & References

• "A Guide to Living with Ehlers-Danlos Syndrome (Hypermobility Type): Bending without Breaking (2nd edition)" byIsobel Knight – While it addresses all ages, it includes specific sections on children, making it a useful resource for parents.​

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• "Zebras of Hope: A Guide to Living with Ehlers-Danlos Syndrome" by Ellen Kelleher – This book provides an empathetic look at EDS and includes advice that can be especially helpful for parents navigating the diagnosis with their children.

• The Ehlers-Danlos Society – Offers a wealth of resources, including a section specifically for families and caregivers, along with links to local support groups and events that could be very helpful for parents.​​​

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• Hypermobility Syndromes Association – Focuses on providing information and support to those with hypermobility disorders, a common feature in many types of EDS. They have resources particularly useful for managing children’s symptoms.

• Pain Management Tools for Children – Many hospitals and healthcare providers offer educational handouts on managing chronic pain, which can be a significant aspect of EDS in children.

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• School and Education Guides – Resources that help parents and educators create an accommodating learning environment for children with EDS, including sample letters for teachers explaining a child's condition and needs.

• What is POTS? – Cleveland Clinic's guide to understanding POTS.

• POTS Management Strategies – Insights into living with and managing POTS symptoms.

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The Dark Academia Aesthetic:

• Origins of Dark Academia – A cultural deep dive into this aesthetic.

• Top Dark Academia Books – Reading list to embrace the vibe.

• The Journal of Rheumatology – Periodicals often contain articles on the latest research related to connective tissue disorders, including EDS.

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• PubMed – A database of medical literature where you can find numerous research articles on EDS.

• The Ehlers-Danlos Society YouTube Channel – Features educational videos, webinars, and personal stories from individuals living with EDS.​​

• Webinar Series by Hospitals and Research Institutions – Many offer free webinars that cover advancements in EDS treatment and research.

• UK Government Benefits and Services Resource Page

Chiari Malformation & hEDS:

• EDS Society – Comprehensive information and support for those with Ehlers-Danlos Syndrome.

• Conquer Chiari – Resources and research on Chiari Malformation.

• POTS UK – Understanding Postural Orthostatic Tachycardia Syndrome and its management.​​

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​Daily Management Tools:

• Spoon Theory Explained – Learn about Spoon Theory and how to apply it in your life.

• Pain Scale Comparison – For tracking and understanding pain levels.

• Accessible Devices – Mobility aids and assistive technology.

• Inspire.com EDS Community – Parents can join to connect with other families dealing with similar challenges, exchange tips, and offer support.​​​

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• Facebook Groups – Groups such as "EDS Kids" and "Parents of Children with Ehlers-Danlos Syndrome" can provide a platform for sharing experiences and advice in a more informal setting.

• EDS Awareness Educational Series – Includes sessions that focus on pediatric issues, often led by specialists who address the unique needs of children with EDS.​​

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• YouTube Channels of Medical Professionals – Some professionals specialize in pediatric EDS and offer regular updates, informational videos, and management tips beneficial for parents.

• "Living Life to the Fullest with Ehlers-Danlos Syndrome" by Kevin Muldowney, PT – This book provides a physical therapy protocol to help manage EDS.

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• "Joint Hypermobility Handbook: A Guide for the Issues & Management of Ehlers-Danlos Syndrome HypermobilityType and the Hypermobility Syndrome" by Brad T. Tinkle – A detailed guide covering various aspects of EDS, including diagnosis, symptoms, and management.

• Inspire.com – Hosts an active EDS support community where individuals share experiences and advice.

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• Ben’s Friends (Living with Ehlers-Danlos Syndrome) – A patient-driven support network.

• EDS Awareness Educational Series – Offers free online Ehlers-Danlos Syndrome learning sessions led by experts and specialists in various health fields related to EDS.