Documenting the medical journey.
The EDS Lass writes about life with EDS, articles on relevant topics including human rights, and blogs about lifestyle and her medical journey.
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Medical Journey – Full Summary
A chronological summary of my medical journey to diagnoses of EDS, POTS, visceroptosis and mesenteric ischemia. The summary is kept updated.
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Seeking an Ileostomy…
I am seeking surgery to resolve the effects of structural and vascular issues (visceroptosis and mesenteric ischemia) which causes ‘loaded’ colon and significant symptoms.
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Colon & Stomach Surgery (2022)
In 2022 I had GI surgery; part of my right large colon was removed with the remainder stitched (pexied) up, and my stomach was stitched…
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Visceroptosis & Mesenteric Ischemia Diagnosed (2021)
Visceroptosis and mesenteric ischemia were diagnosed in 2021. The conditions cause severe GI symptoms.
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Undiagnosed Infection & EDS Fatigue (2021)
I had worsening fatigue and weakness from 2016, extreme by 2020. It turned out to be a long-term undiagnosed infection
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POTS Diagnosed (2020)
After a number of years of PoTS symptoms, I was formally diagnosed in 2020, and was able to seek medications to help.
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EDS Diagnosed (2020)
I was formally diagnosed with hEDS in 2020. The diagnosis made sense of my symptoms, as well as experiences in childhood and early adulthood.
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Fighting for Diagnoses
Like many patients, I have had to fight for a diagnosis. I only now have my diagnosis after being failed and flighting for an answer…
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Lung Collapse
When I was twenty, my lung collapsed. Spontaneous pneumothorax are serious. Medical staff told me it was a panic attack.
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EDS Suspected in Adolescence
I was close to an early EDS diagnosis when I was a child. However, it was wrongly denied.
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The EDS Lass 