Understanding Ehlers-Danlos Syndrome (EDS) and How to Support Your Journey!
If you want to learn about HMS - Please check out our last blog on 'Hypermobility-- Asset or Liability?' !!
Ehlers-Danlos Syndrome (EDS) is a group of connective tissue disorders that can affect any tissue made out of connective tissue. The symptoms can range from neuromuscular (eg. dislocations), pain, fatigue, gastrointestinal, cardiac dysautonomia (eg. Postural Orthostatic Tachycardia Syndrome), depression, anxiety and urogenital concerns.
People with EDS often experience joint hypermobility, skin that is easily bruised or excessively stretchy, and chronic pain.
It is a condition that can significantly impact day-to-day life, especially for performers, cheerleaders, aerialists, and acrobats who rely on their bodies to achieve peak performance.
[Ps. It is also worth noting that not everyone with hypermobility or EDS is flexible!]
A deeper dive into what EDS is:
EDS is a genetic disorder that affects the body’s collagen production. Collagen is a vital protein that gives strength and elasticity to connective tissues, including the skin, ligaments, and tendons. When the production of collagen is compromised, as in EDS, these tissues become more fragile, leading to the symptoms commonly associated with the condition. Symptoms often involve multiple body systems and can vary significantly across individuals.
There are several subtypes of EDS, with Hypermobile EDS (hEDS) being the most common. Symptoms can vary widely, even among people with the same type of EDS. Common issues include joint dislocations, chronic joint pain, and fatigue. Due to these symptoms, people with EDS may find it challenging to maintain their active lifestyle without proper management and support.
Managing EDS in Active Lifestyles
For performers and athletes living with EDS, it’s crucial to understand how to manage the condition to continue pursuing their passions safely. Here are some key resources and tips to help:
Multidisciplinary Care Team: EDS often presents with multisystemic challenges- a multidisciplinary approach is often key in optimising care and outcomes.
Physical Therapy: Tailored exercises can strengthen muscles around the joints, providing better support and reducing the risk of dislocations. Working with a physiotherapist who understands EDS is essential for creating a safe and effective plan.
Pain Management: Techniques such as gentle stretching, heat therapy, and mindfulness practices can help manage chronic pain. Avoiding overexertion is also crucial to prevent flare-ups.
Joint Support: Bracing and taping can offer additional joint stability during performances or intense training sessions. This extra support helps in reducing the likelihood of injury.
Nutrition: A balanced diet rich in vitamins and minerals, particularly those that support collagen production like Vitamin C, can be beneficial. Staying hydrated is also important as it helps maintain the elasticity of connective tissues.
Community Support: Connecting with others who understand the challenges of living with EDS can provide emotional support and practical advice. Social media groups and local support networks are great places to start.
Dive Deeper with Our Podcast Episode
For more in-depth insights, check out our latest podcast episode where we discuss living with EDS/HSM in the performing arts world. We cover personal stories, expert tips, and the latest research on managing EDS/HSM.
You can listen to it here !!!!
Living with EDS doesn’t mean you have to give up on your passion. With the right support, you can continue to perform at your best while managing your condition effectively.
List of resources below that support people living with EDS
HSMA:
A charity that supports hypermobile people and the professionals who work with them. We provide validation, support, education, and self-management tools that are so desperately needed, whatever the hypermobility-related diagnosis (or lack of diagnosis).
EDS (Ehlers-danlos support UK)
About us from the website:
“The Ehlers-Danlos Support UK (EDS UK) was set up in 1987 to support, advise and inform those living with the Ehlers-Danlos syndrome. Over 30 years later, we are the largest UK charity that exclusively represents and supports people with all types of EDS. We work to minimise the impact of EDS by making its diagnosis, treatment and management accessible to everyone when they need it.
We provide support through local physical and virtual support groups led by trained volunteers and via our freephone helpline. We maintain a website, issue regular newsletters, and publish materials to inform the EDS community, those with a specialist interest in the condition, and the wider public.”
The Zebra club
The Zebra Club is a comprehensive online program for people with hypermobility, EDS and chronic pain. It offers safe exercise solutions that help the body to welcome movement.
Started by a movement therapist who has lived with hypermobility.
Project ECHO
EDS ECHO is a series of programs for healthcare professionals across all disciplines who want to improve their ability to care for people with Ehlers-Danlos Syndromes (EDS), hypermobility spectrum disorders (HSD) and associated symptoms and conditions. Enhancing care for people with all types of EDS and HSD through case-based discussions, sharing knowledge, and expert updates is at the heart of what we do.
RCH – a publication that raises awareness
Resources on EDS and HDS.
https://www.edhs.info/home - free resources
https://www.redcliffhousepublications.co.uk/copy-shop - suggested publications reading list
Bendytimez: Hypermobility Resource Page
This page is created for anyone who’s looking for information/helpful resources regarding living with hypermobility. It is a consolidation of
existing self-help resources & educational materials by clinicians/therapists experienced in hEDS/HSD
symptom tracking app recommendations
links to various healthcare directories (to locate EDS/hypermobility-aware providers)
products which may be helpful in your journey of symptom management.
Bendytimez was started by Clarice Liu, a movement coach who works primarily with symptomatically hypermobile artistic athletes.
References
Tinkle, B.T., et al. (2017). The Ehlers-Danlos Syndromes: A Report by the EDS Consortium. American Journal of Medical Genetics, 175(1), 1-26.
Castori, M. (2012). Ehlers-Danlos Syndrome, Hypermobility Type: An Evolutionary Perspective. American Journal of Human Genetics, 90(6), 1121-1123.
Hakim, A., & Grahame, R. (2003). A Practical Approach to Joint Hypermobility Syndrome (JHS) and Ehlers-Danlos Syndrome Hypermobility Type (EDS-HT). Rheumatology, 42(2), 89-99.
Our blogs and articles are not designed to replace medical advice. If you have an injury, we recommend seeing a qualified health professional. We offer both in-person assessments and online consultations!
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