top of page
  • mlincoln214

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.

3 views0 comments

Recent Posts

See All


It was a full circle moment, the kind that somehow makes you feel a little bit vindicated. As if the cosmos is admitting that all of the struggles that you and your family have endured is seen and per

Coming Soon: Guest Blogs

The mission of Pathways To Trust is to help create allyships in the rare disease community. We facilitate relationship building between patients, patient advocates, healthcare providers, health system

Selfcare is Healthcare, Part II: Sleep

Sufficient sleep is vital for everyone’s health, but many people struggle to get enough. Many rare disease patients live with chronic, debilitating pain which can make it nearly impossible to fall asl


bottom of page