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Found 14 results

  1. <p>http://www.orthop.washington.edu/uw/ehlersdanlos/tabID__3376/ItemID__32/PageID__1/Articles/Default.aspx</p>
  2. 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, sof
  3. 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-
  4. DINET member name: Nadèche Hanique Nadèche's hometown: Brabant Province, Holland, Southern Netherlands Diagnosis: EDS, POTS Facebook: https://www.facebook.com/happymailforfighters/Instagram: https://www.instagram.com/happymailforfighters/ Click here to read this profile in Nadeche's native language, Dutch What inspires Nadèche's work, in her own words... I have eds, so I’ve been showing symptoms my whole life and was diagnosed when I was 11 years old. I got diagnosed with POTS when I was 19 years old, I am 21 now. For years I wanted to start my own card project, but I did
  5. DINET member name: Nadèche Hanique Nadèche's hometown: Brabant Province, Holland, Southern Netherlands Diagnosis: EDS, POTS Facebook: https://www.facebook.com/happymailforfighters/ Instagram: https://www.instagram.com/happymailforfighters/ Wat inspireert werk Nadèche's , in haar eigen woorden ... Ik heb EDS, dus ik heb met symptomen mijn hele leven en werd gediagnosticeerd toen ik 11 jaar oud was. Ik werd gediagnosticeerd met POTS toen ik 19 jaar oud was, ik ben 21 nu. Al jaren wilde ik mijn eigen kaart project te beginnen, maar ik wist niet hoe te beginnen enz. Vorig jaar heb
  6. 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 ail
  7. DINET member name: Katie Haynes Katie's hometown: Youngsville, NC Diagnosis: POTS, EDS, MCAS, AMPS (Amplified Musculoskeletal Pain Syndrome), IBS, Alopecia Photography: https://www.facebook.com/KatieHaynesPhotography/ Smiling While Sending Hope: https://www.facebook.com/Smiling-While-Sending-Hope-561096004224670/ VOG project: https://www.facebook.com/pg/Smiling-While-Sending-Hope-561096004224670/photos/?tab=album&album_id=563489880651949 Cambridge Mask project: https://www.facebook.com/pg/Smiling-While-Sending-Hope-561096004224670/photos/?tab=album&album_id=589899214677682 I
  8. DINET member name: Cassandra Pacquin Cassandra's hometown: Cool Springs, NC Diagnosis: EDS, Mast Cell, Congestive Heart Failure email: juscass86@gmail.com website: Eagles Wings Studio https://www.facebook.com/EaglesWingsStudioNC/ In Cassandra's words..... Hello!! My name is Cassandra and I'm an EDS Trifecta Zebra with Dysautonomia and Mast Cell as well as congestive heart failure. I'm a chef/owner of our family artisan granola bakery business. Over the past year I've had to refocus my energy and talents due to my limitations and have gone back to my original loves of mixed
  9. After I was diagnosed with EDS, I started doing research and found this doctor, Dr Brad Tinkle who is supposed to be the Dr Grubb of EDS. He's written a few books about it, this being his newest & most up to date: http://www.amazon.com/gp/product/098257715X?ie=UTF8&force-full-site=1 I bought it and think its a wonderful book. I found I've had so many more EDS symptoms & complications that I knew. He breaks down each body system and how it can be affected by EDS and hypermobilty. It's a great reference to have when something goes wrong to take to your dr. It has a lot of pr
  10. I cannot recall the topic I was following but a poster suggested that when I see my hemeoncologist (new visit, referred for the Delta Granule Storage Pool Deficiency found by lab testing ordered by cardiac specialst in dysautonomia), that I ask about a tryptase level. Commonalities were IBS-D, chronic sinusitis, multiple drug, food and environmental allergies, early onset arthritis, fibromyalgia, CFS, tendonitis, pleuritis, tenosynovitis, pericapsulitis, osteomyelitis, osteopenia (early onset), bronchitis, bursitis, pituitary adenoma, ovarian cysts (and cysts on kidneys, lungs, heart), pericar
  11. I have had waves of nausea off an on that I am assuming is from the dysautonomia. I have gastritis and GERD and take Rx's for those but sometimes these wave of nausea get pretty bad. I am trying to finish up physical therapy aquaciser--4 more session. When I left on Tues., I thought I was going to toss my cookies in parking lot when leaving. Well, today the cramping was so be while in treadmil but again was off and on and I kept drinking water. When session was over and I started to shower, had to run out of shower and hug the toilet, puking and wretching (no good for the low BP I already have
  12. I have eds and pots. I do not know what type as my husband is in the army, and the medical center and my doctors say they can't do genetic or research testing. I do not know if i have pots because of my eds or it is just a coincidence. My pots came on after I had a hysterectomy after my last pregnancy 5 years ago. After the delivery my heart rate was fine for 6 weeks, then I had to have a hysterectomy due to uterine prolapse, and from that point on I had a fast heart rate upon standing. I have had the typical eds and pots symptoms. But starting a year or so ago my heart rate won't go back down
  13. Hi all, Its been a while since I was on here, I was doing so well and recently I have been fainting all over the place and had a really hard time during 'That time of the month'!! But anyway!! I was wondering if any of you knew more about Pots and EDS, I have been properly diagnosed with pots but my specialist and a few Dr.s I have met think I have EDS also as I have sore and hyper flexable joints, stretchy, see through pale skin adn the scary part is I bleed from various areas without prior injury or force, namely Teeth and other sensitive areas, this is what makes the doctors think I may ha
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