A week after the summit officially “ended” I’m almost finished viewing the videos of the sessions (which took place at horrible hours of the night and early morning Australian time). With the beauty of technology and new approaches to connecting across the globe (there will be things we thank COVID for), it’s been great to immerse in learning the latest about Ehlers Danlos Syndrome (EDS) and hypermobility syndromes and connecting with other professionals worldwide who are also committed to advancing our knowledge and management of these conditions.
So, what are the take-home messages from Summit? Primarily, that there is still so much to learn. Despite this, it is heartening to hear of the many efforts of clinicians and researchers globally to increase our understanding of the impacts of Ehlers Danlos and other hypermobility syndromes. While every new study brings at least as many questions as answers, this is the nature of research and bit by bit we move forward. For patients with these conditions it can be frustrating to continually come up against unknowns, but there is also a lot of evolving knowledge to help support patients in achieving and maintaining optimal health and well-being.
When someone is diagnosed with a condition like Ehlers Danlos Syndrome, it is natural to want to know what the prognosis is or what this might mean for their future health. This is a difficult question to answer as the range of impacts varies enormously from minimal to extensive. Many hypermobile people will remain fit and healthy through their lifespan and enjoy all the benefits that can come with increased flexibility while others may experience a broad range of health challenges. Research has suggested that Ehlers Danlos patients may have a predisposition to issues in gastrointestinal, urogenital, neurological, cardiovascular, dental, gynaecological and immune functions, requiring the coordinated input of a broad range of health professionals. Or, they may have none of these issues.
Obtaining a definite diagnosis of one of the EDS subtypes can be challenging for many, given the low level of awareness of EDS among health professionals and the difficulties of accessing genetic testing, along with the lack of a specific genetic test for the hypermobile EDS subtype. Given this and the varied presentations and prognoses possible, a pragmatic approach for anyone who believes they may have a hypermobility syndrome such as EDS (whether formally diagnosed or not) is to ensure that all their health professionals are informed of the possibility they may have EDS so that it can be considered in any healthcare needed. As EDS may predispose individuals to particular conditions, and may alter the way their body responds to some therapies, this knowledge is important to help the patient and health professionals make informed choices of the best option in managing any presenting health issues.
If you are in contact with health professionals who may wish to learn more about EDS, they may wish to join the Hypermobility Special Interest Group we have created on LinkedIn. This will give them access to professional development options, and a network of professionals working with hypermobile patients. The following resources may also be of use: