Chasing a cure for Vascular Ehlers-Danlos Syndrome – Interview with D.A. Roach – author of Rarity D.A. Roach’s story is also featured in Our Stories of Strength – Living with Ehlers-Danlos Syndrome “Vascular Ehlers-Danlos Syndrome is a genetic condition caused by an alteration, also known as a mutation, in a gene called COL3A1. This gene …
Living with Chronic Fatigue Syndrome I saw this article yesterday and had to share it – Top Scientist Takes On Chronic Fatigue Syndrome. While reading, I couldn’t help but identify with many topics and ideas that were discussed. Many people may be alarmed at how severe the man in this article is affected by CFS, but most …
Newly identified variant of Ehlers-Danlos Syndrome – COL1A1 mutation causes mild Ehlers-Danlos syndrome Sofie Symoens UGent, Wouter Steyaert UGent, Lynn Demuynck UGent, Fransiska Malfait UGent, Anne De Paepe UGent, Karin EM Diderich and Paul Coucke UGent (2015) American Society of Human Genetics, 65th Annual meeting, Abstracts. Mark abstract Abstract Type I collagen is the predominant protein …
Life being velcroed to the floor 10 ways I manage the daily battle against chronic fatigue My second sign and symptom of Ehlers–Danlos syndrome as a kid, second to having a lazy left eye, was chronic fatigue. I’ve been tired my whole life. It wasn’t until I was a teenager and then again as a …
New type of Ehlers-Danlos Syndrome (EDS) in Patients With Congenital Adrenal Hyperplasia Rachel Morissette*, Wuyan Chen*, Ashley F. Perritt, Jennifer L. Dreiling, Andrew E. Arai, Vandana Sachdev, Hwaida Hannoush, Ashwini Mallappa, Zhi Xu, Nazli B. McDonnell, Martha Quezado, and Deborah P. Merke Address all correspondence and requests for reprints to: Rachel Morissette, PhD, National Institutes …
Ehlers-Danlos Syndrome, Hypermobility Type, Is Linked to Chromosome 8p22-8p21.1 in an Extended Belgian Family Volume 2015 (2015), Article ID 828970, 9 pages Full Text Article Research Article Delfien Syx, Sofie Symoens, Wouter Steyaert, Anne De Paepe, Paul J. Coucke, and Fransiska Malfait Center for Medical Genetics, Ghent University Hospital, 9000 Ghent, Belgium Received 15 June …
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Living with Lyme Disease The story shared below is a guest post from my friend Lauren. Lauren and I went to highschool together and before Brian and I moved our family to another town, Lauren and I would see each other fairly often. We would get together for playdates, or a night out with a few …
Surviving [solidcore] – hypermobility meets the megaformer [solidcore] is a boutique fitness studio in Shaw area of Washington, DC; however, there are multiple [solidcore] studios in and around the DC area, and the [solidcore] brand keeps expanding. The workout at [solidcore] is based on The Lagree Method, which uses a Pilates-like machine called the megaformer. The …
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Striving for the [100 class club] [solidcore] and the [hypermobile] participant “Create the strongest version yourself.” – [solidcore] I always feel like I’ve been through a first right of passage after leaving a [solidcore] class, but in a good way. The instructors call it, “[solidcore] brain.” I call it “Pilates on Crack.” Saturday, I decided …
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Think Wellapalooza isn’t for you? Think again! Think Wellapalooza isn’t for you, because you don’t have Ehlers-Danlos Syndrome, Mastocytosis or Mast Cell Activation Syndrome (MCAS)? Think again …. I can guarantee that if you attend Wellapalooza, you will come away with a much better understanding of how seemingly unrelated conditions are actually related and also …
