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The 10 Realities of Living With Ehlers-Danlos Syndrome as a Teenager

key information

source: The Mighty

year: 2016

authors: Megan Conrad


In April of this year I became very sick with fever, bloody urine, horrific flank pain, extreme fatigue to the point of not being able to stand, and severe nausea. I was bedridden and in and out of the ER and children’s hospital as well as Mayo Clinic in Rochester for four months. I had multiple ultrasounds, procedures, scans, IVs with various meds, X-rays, MRIs, nuclear tests, and general labs until a rheumatologist finally pieced together what was happening. She messed with my joints and evaluated all of my tests and symptoms. She found it strange that even though none of the results were extremely abnormal, every test was still a little bit abnormal. My left renal vein was slightly compressed, but not enough to call it Nutcracker syndrome yet. I discovered I had a cyst on my left kidney, and the basement membranes of my kidneys were almost nonexistent. I also realized I have an IgM deficiency. It was very strange. After examining me, she told me I have a score of nine on the Beighton scale.

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