A recent Twitter discussion about this area of health began with commentary about a chapter that was written in 2014 and published in 2015. The tweet linked The Ehlers-Danlos Society to this chapter, but we wish to be clear that we had no part in writing it, and that we do not intend to pass comment on it.
The International Consortium on EDS and related-disorders published on this area of health and a number of other related-disorders in the American Journal of Medical Genetics in 2017. These were peer-reviewed publications drawing on the published literature. The Ehlers-Danlos Society has placed these articles and lay-person summaries on its website as a summary of the literature on the subject to that date.
In addition to this we also have a page dedicated to other research in HSD and EDS. The medical publications listed here are not an endorsement of the content within them. The Ehlers-Danlos Society believe that everyone should be able to view the research that has been done around the hypermobility spectrum disorders and Ehlers-Danlos syndromes.
The Society is currently working on several projects, with a number of medical experts in the field and patient representatives to bring more information on all aspects of psychological health to our community. One element of this program is a conference that is being held in Edinburgh this year. It is the first time we have devoted a day to this particular subject.
We have asked experts to join us to consider complex areas of psychological health because we know from our community that there is a desire that these disorders be discussed. In addition, and in response to another comment in the same Twitter feed, the Society does recognize the growing observations and literature in neurodevelopmental medicine and in particular ADHD, and, has invited an expert in this field to speak at the Edinburgh meeting.
We receive feedback from multiple sources that inform our choices or actions. The Society considers this to be one of many important areas of ongoing discussion, and has received excellent support for the Edinburgh conference.
Anxiety, phobias, and depression are HSD and EDS ‘related-disorders’ that have for several decades been discussed in the medical literature. They continue to be an important part of discussions and clinical research, that the Society supports, aiming to remain non-partisan.
Our community has a mixture of needs. For some there are no underlying psychological concerns; for others their anxiety and/or low mood arises because of concern over unexplained or poorly managed symptoms, and the impact they have on their life. For others, their mood is influenced by the way they have been treated as a person; and, for some there is an underlying primary concern with anxiety and/or depression. The Society understands this is multi-faceted
We would not endorse a statement that says that these issues can only be explained by the presence of HSD or EDS, or that they are the explanation for symptoms while dismissing the HSD and EDS.
We would never endorse a person not being assessed for psychological health concerns if there was a genuine need. Equally we would never endorse such diagnoses being imposed on an individual without justification.
The Society believes we must embrace psychological health as an equal partner in people’s wellbeing, and, we will continue these discussions and encourage the clinical research in order to better inform everyone and support our community.
