The EDS Lass writes about life with EDS, articles on relevant topics and her medical journey.
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After years of symptoms, I was delighted to finally be diagnosed, and therefore could try understand my body and try to get appropriate healthcare.
Finally! I was formally diagnosed with hEDS in 2020. The diagnosis made sense of my symptoms, as well as experiences in childhood and early adulthood. It gave context to try to find answers to my GI symptoms. It means we could try to get me under the care of EDS-aware consultants. Although having EDS is not good news, if one has a condition it is good to know.
I remain grateful to the consultant, who was so professional, proactive, thorough and understanding.
The assessment revealed that every one of my major joints subluxed. Subluxation is a partial dislocation of a joint, where the bones are moved out of their normal position but remain in contact with each other. My shoulders, elbows, jaw, hips, knees and ankles are affected.
I realised how much my body had been working through and why I had experienced fatigue. We were relieved and pleased to finally have context.
Many years had passed since the consultant I saw as a child had fervently, wrongly dismissed an EDS diagnosis. It is bittersweet that I was so close to diagnosis before, but glad to be finally diagnosed.
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.
Thanks to support from my wonderful family, I finally got my EDS diagnosis. It lead to my PoTS diagnosis, and meant we could started to research EDS and seek appropriate GI investigation.
The EDS Lass 