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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, 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
  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-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.
  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 didn’t know how to start etc. Last year I made an Instagram account and I found out that there were other people with chronic illnesses having their own projects to support others and that ’s when I realized I should at least try it. So I posted a message on Instagram asking if anyone was interested in receiving a personalized card. I got so many requests in such a short amount of time, so I made a different account just for my project and it has been growing ever since! I’ve always wanted to help and support others. And I can do this work from my own bed, so it works very well for me personally too. Making others smile, makes me smile! I know from my own experience that it is not always easy to live with chronic illnesses, so I wanted to make the fight for others a little bit easier by supporting them and send them some happy mail to encourage them to keep fighting. I also want to make them feel less alone. I started Happy Mail for Fighters on the 29th of June 2017. So I’ve been doing this for almost a year now and I hope to continue this project for many years to come! Nadèche on family and life..... I’m the only one in my family who has these illnesses. I’m very close with my family and they always support me and help me and I’m very thankful for that! I’m also really thankful that my parents and sister help me with my project. Writing is very difficult for me so my sister writes the addresses on the envelopes and my mom brings the cards to the post office because my chronic fatigue makes it difficult to go to the post office etc. I got diagnosed when I was 11 and I got help from a medical psychologist. She helped me so much and I was so thankful! That’s when I realized that that’s what I want to do in life: helping others. It has been my dream ever since to become a medical psychologist and I study psychology now. Hopefully, I can help others cope with their illnesses and show them that life is still beautiful and you can still achieve things and follow your dreams.
  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 ik een Instagram-account gemaakt en kwam ik erachter dat er andere mensen met chronische aandoeningen die hun eigen projecten om anderen te steunen en dat is toen ik besefte dat zou ik in ieder geval proberen. Dus ik een bericht op Instagram de vraag of iedereen die geïnteresseerd is in het ontvangen van een gepersonaliseerde kaart was. Ik heb zo veel verzoeken in zo'n korte tijd, dus maakte ik een andere account alleen voor mijn project en het is sindsdien steeds groter! Ik heb altijd al om te helpen en te ondersteunen anderen. En ik kan dit werk doen vanuit mijn eigen bed, dus het werkt heel goed voor mij persoonlijk ook. Het maken van anderen lachen, makes me smile! Ik weet uit eigen ervaring dat het niet altijd gemakkelijk is om te leven met chronische ziekten, dus ik wilde de strijd voor anderen een beetje makkelijker te maken door hen te ondersteunen en stuur ze sommige blij mail hen aan te moedigen om te blijven vechten. Ik wil ook hen minder alleen voelen. Ik begon Gelukkig Mail for Fighters op 29 juni 2017 Dus ik heb dit al bijna een jaar en ik hoop dat dit project voor de komende jaren voort te zetten! Nadèche op familie en het leven ..... Ik ben de enige in mijn familie die heeft deze ziekten. Ik ben heel dicht bij mijn familie en ze steunen me altijd en me te helpen en ik ben erg dankbaar voor! Ik ben ook erg dankbaar dat mijn ouders en zus me helpen met mijn project. Schrijven is heel moeilijk voor mij dus mijn zus schrijft de adressen op de enveloppen en mijn moeder brengt de kaarten naar het postkantoor omdat mijn chronische vermoeidheid maakt het moeilijk om naar het postkantoor etc. Ik werd gediagnosticeerd toen ik 11 was en ik kreeg hulp van een medisch psycholoog. Ze hielp me zo veel en ik was zo dankbaar! Dat is toen ik me realiseerde dat dat is wat ik wil doen in het leven: het helpen van anderen. Het is mijn droom sinds om een medisch psycholoog en ik studeer psychologie nu. Hopelijk kan ik anderen helpen omgaan met hun ziekte en laten zien dat het leven nog steeds mooi en je kunt nog steeds dingen te bereiken en volg je dromen.
  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 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/
  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 In Katie's words... A little bit about me: I’m 18 years old and I have POTS, EDS Type 3 and MCAS.and a few other illnesses. I love photography and started my own photography business. I also love sports, shooting, hunting, showing rabbits, crabbing and graphic design. But my mission in life is to help other people. Helping others has been a big mission my whole life, even before getting sick, to make an impact on people’s lives. I believe I do that by organizing toy drives, making comfort packages for local children’s hospitals, making awareness videos and my VOG and Cambridge Mask projects. Making an impact on others lives is what I love to do. I believe that this mission will continue to grow and continue to help many others in the near future! Katie’s joy….. I love to bring joy to kids and teens faces and make them feel at ease while they face big obstacles in their lives whether that be chemo, a transplant, or some other health challenges. I have done this project of toy drives on my own now for about 5 years. I also have sponsored local families in need of certain items. Along with that, in December of 2017, I launched a project where I send comfort packages and masks to people fighting chronic illness. I also created a facebook page to help grow my project in January of 2018. I also give out packages and/or masks to the teens that I meet in the area and at the hospitals. This is my main long-term goal; to grow this and make it bigger each year. I find people’s stories that speak to me and share them in groups that I’m a part of. And I send masks or packages to as many people as possible. Due to cost, I keep the packages that I give out mostly local, but I have mailed many masks and will continue to do so as funding allows. I also keep it local because I like to meet each of the warriors in person and spend some time with them. What inspires Katie….. I was inspired to start this to get involved about 7 years ago when Paxton, a little boy at my church, passed away. Not long after his passing, I helped with a toy drive called "Presents for Paxton" for UNC Hospital. A few years later, I went camping and met a girl named Skyla Rippy who has a rare blood disorder called Diamond Black-Fan Anemia. We got to know each other very well, and now we are very good friends. When I found out that she was receiving care at hospital local to me, I started going with her to her appointments and began to do research on childhood illnesses/cancer. I then started workshops and presentations to share with others about what I had learned. I also became friends with kids I would meet at the hospital on social media and in real life.
  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 media inspirational art and writing. I love being able to put my education from UMass/Amherst in Fine Arts to good use again!! My pieces are combined mixed texture and finish high-end papers, Austrian Crystals, silk and textured mat finish, and shadow boxes with glass fronts. Each is an original and crafted with love and inspiration. The purple piece is one I recently sold, the one of the leaves is a work in progress that will be 2 6x6 matching pieces with Ecclesiastes 3:1 "To every season..." split between the two. It comprises 4 different colors of textured papers and Swarovski Austrian crystals in amber, and will be matted in a dark brown beveled mat finish and framed in matching black shadow boxes. The pink piece is currently available for sale on the Eagles Wings Studios FB page.
  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 practical tips for coping, too.
  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), pericardial effusion, diverticulitis, colon polyps, and a host of other ailments. I was feeling scared and overwhelmed and intimidated going to see a hemeoncologist at big Cancer Center. This doctor could not have been nicer. He listened to me and I took copies of my labs showing low T cells, T-helper cells, IgG1, IgG2, other IgG subclasses and low gamma globulins with fluctuating WBCs mostly 'normal'. He asked about parents having chronic sinusitis (why I did not know--both had cancer). I summoned the nerve to ask about this Mast Cell Activation Disorder (all the while waiting to be dismissed, but to my amazement, I was not). He told me there was a very good chance that it might be. He said that it could be that I just have 'lazy phagocytes'. The satellite clinic where I saw him was not able to perform what tests he thought I needed. So now he has referred me to 2 of his associates in Columbus--referring to one for 'multicomplex immunodeficiencies' and referring to the second one for 'immunodeficiencies and the Delta Granule Storage Pool Deficiency'. So I am still scared and yet feel comfortable enough to raise the question thanks to you posters who have provided me with info. Had I only seen hematologist for the bleeding (as the letter instructed), the immune deficiencies I've had may have remained missed as a potential piece to the puzzle. My appointment was the day before Thanksgiving--the same day the phone company accidentally took out my internet when they started up somebody else's new internet services in the neighborhood, crossing the circuits and disabling me until today. My hemeoncologist wanted me in asap and was confident he could do it since he was insider making referral, yet the first appointment isn't until close to Christmas and the other hemeoncologist appt. is late Jan. Without your discussions and input and references, I would never have learned about the link to such things. Thank you all.
  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). Since I had that cramping and nausea so bad on Tuesday, and my BP was only 92/64 before therapy, I took extra 15 mg Mestinon before therapy this time (thinking maybe things wouldn't be so bad, but they were worse). I didn't want to pull the call light--could not have got to locked door and wasn't even dressed. I managed to get semi dry enough to get of of bathroom and lie down on one of their empty beds. Therapist came running over--HR was 115 (that was few minutes after I'd been laying and with my OI, my HR has been around 60s when BP drops now). BP systolic was 82 and she never could hear the diastolic on different attempts. I was started on Midodrine in Sept. (but had nausea before that--not so severe). In Oct. Mestinon was added (had been on higher dose of that in past without effects). Later in Oct. the Midodrine was doubled. Could this worsening nausea be the affects of the vasoconstriction in the stomach? Do these meds cause nausea worse? Should I have eaten something with the Mestinon (heart doc said didn't need to)? Can anybody offer insight/share experience? I imagine in down to around 93 lbs. I try to eat small frequent meals when in between the nausea.
  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 to a normal rate when sitting or laying. My heart rate is 100+ while I am sleeping and is typically 120-150s sitting and will be 140-200+ upon standing. I have had headaches for years as well. I have always been cold in my hands, feet, nose, bottom. And I never really sweated. Well starting about a year ago when my heart rate would be high while sleeping I started sweating and in the last few, months it has gotten really bad. I have hot flashes, excessive sweating only upper body, my hands and feet still stay cold. Well I started have chest pains more often, and nothing seems to help or make it worse, it just happens. Well in the last month my blood pressure is now high consistently. I am skinny and don't have any other health problems. I don't drink alcohol or caffeine and I do not smoke. I know standing norepinephrine levels can be high with pots, but my sitting norepinephrine levels are high, normal is 100-700, mine was 1107. The family doctor is thinking a pheochromocytoma, but I have had a CT of my adrenal hands came back clear, I have had an mibg scan, came back clear as well. My endocrinologist, sayds I have all the symptoms of an extra adrenal pheochromocytoma, but doesn't think I have it as it is rare. He is doing new blood work to seei and possibly 24 hr urine to check my norepinephrine levels again. If it isn't a pheo, my doctors have no idea what it is. I am not taking meds, as i had to stop for my mibg scan. I know with a pheo people typically have "episodes" where their heart races, sweats, headache and that is when the norepinephrine is being released excessively. My situation is that my heart is always racing. Yes i do have episodes where it is worse, but i never have a normal heart rate anymore. My question is has anyone had this or knows what it might be?
  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 have vascular EDS. So I was put on a waiting list here in the hospital I go to here in Ireland and I hear nothing for ages (about 4 months) so I decide to ring and see what the story is, only to be told I have been put on a 2 year waiting list before ill be called...!!! If I have Vascular, I have read and have been told it could be deadly!!! I need to know before we decide to have kids or before something bad happens, 2 years is just not possible!! I am doing everything I can to get back to my specialist before my next appointment in January but right now I am at a loss as to what to do!!! :-/
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