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Found 21 results

  1. <p>http://www.totaleyecare.com/ocular-complication-ehlers-danlos-syndrome-1.html?_ga=1.14621751.1418931888.1390611040</p>
  2. <p>http://www.neurologyindia.com/article.asp?issn=0028-3886;year=2005;volume=53;issue=3;spage=339;epage=341;aulast=Mathew</p>
  3. <p>http://www.reumatologia-dr-bravo.cl/para%20medicos/HIPERLAXITUD/%20www_jointandbone_org_RODGRAH.htm</p>
  4. <p>http://ghr.nlm.nih.gov/condition=ehlersdanlossyndromeclassicaltype</p>
  5. <p>http://www.orthop.washington.edu/uw/ehlersdanlos/tabID__3376/ItemID__32/PageID__1/Articles/Default.aspx</p>
  6. <p>http://www.totaleyecare.com/ocular-complication-ehlers-danlos-syndrome-1.html?_ga=1.14621751.1418931888.1390611040</p>
  7. <p>http://www.neurologyindia.com/article.asp?issn=0028-3886;year=2005;volume=53;issue=3;spage=339;epage=341;aulast=Mathew</p>
  8. <p>http://ghr.nlm.nih.gov/condition=ehlersdanlossyndromehypermobilitytype</p>
  9. <p>http://ghr.nlm.nih.gov/condition=ehlersdanlossyndromeclassicaltype</p>
  10. <p>http://www.orthop.washington.edu/uw/ehlersdanlos/tabID__3376/ItemID__32/PageID__1/Articles/Default.aspx</p>
  11. edriscoll

    EDS Overview

    What is Ehler's Danlos Syndrome? EDS is a connective tissue disorder caused by various defects in the synthesis of collagen. Along with Hypermobility Spectrum Disorder (HSD), they are a class of genetic disorders, present at birth but unrecognized for years. There are 13 different types of EDS. Studies have found that EDS is associated with dysautonomia, usually in the form of POTS and OI. Recent findings report 80% of Hypermobility EDS patients have POTS and 33% OI. In addition to the symptoms associated with dysautonomia, some common symptoms of EDS are joint laxity, soft skin, easy bruising, widespread manifestations in the tissue, vascular system and organs. Strategic, customized exercise plans, a skilled medical team, and protection of joints and skin, and pain management are the essentials of a good treatment plan and management of the disorder. To learn more about the connection between EDS and POTS, visit our page "What causes POTS". To learn more about Ehler's Danlos Syndrome, visit the Ehler's Danlos Society at https://ehlers-danlos.com For information about POTS symptoms and treatment, visit https://www.dinet.org/content/information-resources/pots/ Source: Ehler's Danlos Society
  12. DINET member name: Sierraboo214 Sierra's hometown: Tracy, CA Diagnosis: POTS, Mast Cell Activation Syndrome, Ehlers Danlos Syndrome, PTSD, Gastroparesis, Immunodeficiency Website: https://www.instagram.com/chigos_closet/ Sierra's pillows for patients project: https://www.gofundme.com/portpatientpillows In Sierra's words.... I suffer from POTS (stage 3 dysautonomia), mast cell activation syndrome, Ehlers Danlos Syndrome, PTSD, and immunodeficiency. I currently model and do animal photography. I love to sing and act, but my newest project is making free port pillows for port-a-cath patients. I send them all over the world and get donations to keep the project going. I have a service dog named Chigo. I do animal photography as well as studying animal psychology in the hopes of one day opening an animal rescue. I love to help people. I started making port pillows to give to patients for free because I understand the need. I have been using social media to distribute them to people and I have been collecting donations to cover the costs. It helps me cope with my own illnesses because it makes me feel like I really have a purpose.
  13. edriscoll

    EDS Why Zebras?

    Why are EDS patients called Zebras? Patients with EDS frequently call themselves Zebras, why? According to the Ehler's Danlos Society, it originated from something taught to medical students about diagnosing patients - "When you hear hoofbeats behind you, don't expect to see a zebra" In other words, look for the most common and usual, not the most unusual when diagnosing a patient. The Zebra became the symbol for EDS patients because, as with most dysautonomia disorders, it takes years to gain a diagnosis because the patient looks too "normal" or seems too young to have so many ailments. Generally, it is unexpected and unusual. The Zebra symbolizes the idea that "when you hear hoofbeats, it really is a zebra". For more information about Ehler's Danlos Syndrome, visit https://ehlers-danlos.com For information about POTS symptoms and treatments, visit https://www.dinet.org/content/information-resources/pots/
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