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Attention Must Be Paid

Finally, EDS patients and families are starting to get the recognition they have only been able to dream about. This underdiagnosed, misunderstood and often maligned population was the subject of two groundbreaking studies in the UK that looked at the experiences of patients diagnosed with or suspected of having EDS. Not surprisingly, the results demonstrated that there was significant room for improvement.


The most recent study looked at the experiences of parents. Two hundred and ninety seven parents completed a questionnaire on their encounters with the healthcare system, and 13 of these responders were interviewed to get a deeper understanding of their experiences. Four themes consistently appeared in the responses:


· Understanding by providers is key

· Fostering a therapeutic partnership is essential to positive patient experience

· The current healthcare system has definite limitations

· Obtaining a diagnosis has an impact on the journey


Hopefully, this study is a gateway for further research into the impact patient and caregiver experience has on outcomes for EDS patients. To read more, follow this link.

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