The Zebra Life

Education • Advocacy • Consulting

Community Highlights

Vanessa Matelski

Vanessa Matelski is the creator of PotsieSpoons and a fellow zebra who has dealt with MALS and POTS. She creates amazing comics that are funny, moving, and also very informative regarding some of our fun disorders. Check her out on her website https://potsiespoons.com and various social media platforms!

Cortney Does Science

Cortney Gensemer, PhD is a research scientist with a specific focus on the genetic and molecular mechanisms of Hypermobile Ehler’s Danlos Syndrome and its related conditions. She recognizes that hEDS appears to have an immune system component, and she has published several research papers exploring that hypothesis. Her work with The Norris Lab has contributed leaps and bounds to the current understanding of hEDS. Please follow her on Facebook at Cortney Gensemer, PhD, @cortdoesscience on Instagram, and also on her website https://www.cortneygensemer.com.

What’s New in Research

The Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) study was initiated by The Ehlers-Danlos Society to examine the genes of over 1000 particpants around the world who have hEDS or HSD (Hypermobility Spectrum Disorder). It is the most extensive study involving over 85 counties with an aim to find a genetic cause of hESD…. <Read more>

The Norris Lab, located in Charleston, SC, is a research lab that frequently hosts interns who have lived experience with disabling conditions and collaborate to gain perspective and advancements in the areas of Ehlers-Danlos Syndrome (EDS) and cardiovascular disease. Two recently discovered genes show promise for their relation to hEDS…

<Read more>

Latest Posts

  • The Journey to MALS

    The Journey to MALS

    Median Arcuate Ligament Syndrome At the time I started seeing my POTS specialist, he had been investigating Median Arcuate Ligament Syndrome (MALS) as a possible cause of POTS due to vagus nerve inflammation. MALS is when the diaphragm hangs too low or the celiac artery is too high coming off the abdominal aorta, and it…

    Read more: The Journey to MALS

  • The Journey to hEDS

    The Journey to hEDS

    Hypermobile Ehlers-Danlos Syndrome The first time I heard about EDS was when I was getting my POTS work-up from my electrophysiologist. He knew it was co-morbid with POTS and sent me to a renowned geneticist in Dallas, Dr. Wilson. He took a family history. My mother is known to bruise easily, but she is also…

    Read more: The Journey to hEDS

  • The Journey to POTS

    The Journey to POTS

    Postural Orthostatic Tachycardia Syndrome I began searching my symptoms. “Normal” labs, dizziness (especially upon standing), fatigue, heat/cold intolerance, and of course, tachycardia (heart rate over 100 bpm) when standing. POTS appeared to fit all of those symptoms, so I asked my cardiologist for a tilt table test. She stated that she didn’t think I had…

    Read more: The Journey to POTS