The EDS Lass writes about life with EDS, articles on relevant topics and her medical journey.
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Many people with EDS endure years of symptoms before diagnosis. I was almost one of the lucky ones who have an early diagnosis. However, it was wrongly denied.
Symptoms of back pain and joint hypermobility impacted school life.
I had the chance of a timely diagnosis when my family and I were made aware of EDS. We went to my GP who referred me to a consultant.
However, the consultant I saw was annoyed by the mention of EDS and denied it. I remember the appointment, and her expression of frustration. My parents were told there was nothing wrong and EDS was very rare.
When I finally received my late diagnosis of EDS in 2020, I requested my medical notes for the encounter we had in my childhood. The notes also documented the frustration I remember seeing in the consultant.
My family were given false reassurances that there was nothing wrong. The consultant’s letter ends state that she gave this reassurance. It was shocking to see this, formally recorded, years later, after my family has been wrongly and suffered following the false denial of EDS.
This consultant’s failure to consider EDS, and quashing the possibility, has had numerous, significant practical impacts for me and my family.
A recent report (hEDS-START) from the University of Edinburgh found an average time to diagnosis of 20 years. The report states: “Key findings underscore the pressing need for action: Prolonged Time to Diagnosis: Individuals with hEDS/HSD in Scotland endure an average wait of 20 years from symptom presentation to diagnosis, significantly impacting their physical and mental well-being“.
The delay in diagnosis is unacceptable, and change is needed, as the report notes.
The EDS Lass 