Ehlers Danlos Syndrome doc

Ehlers Danlos Syndrome prattbros

I made this small piece about Ehlers Danlos, a connective tissue disorder. Sadly, many children and adults go on for years suffering from this painful condition before a diagnosis is made. This is a life long disabilitating condition that causes chronic pain and injuries from sublaxations and dislocations. I n severe cases it is life threatening. Only a handful of doctors worldwide are experts in this condition and despite it being a joint and muscle condition, the majority of the worlds Rheumatologists fail to diagnosis this time and time again. Many parents of child sufferers have been investigated for child abuse due to the bruising and constant injuries their children endure, just adding to the trauma. Adults have gone from doctor to doctor, and many end up in the hands of mental health deemed to have psychological problems for an imaginary condtion. There is a simple diagnosis proceedure initially, that is a good indicator that Ehlers Danlos, especially the Hypermobility type could be the problem, why is this not being done? Music: Nothing Hurts by Catatonia No copyright was intended by the use of this music which can be purchased from any reputable music shop or downloaded for a small fee from any legitimate online music site. ps: This is one of my early videos and I know it runs a bit fast for some to be able to read, appologies for that x

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I made this video to represent our families battle with Ehlers-Danlos Syndrome type IV. We have been working with a foundation called Ehlers-Danlos Network CARES Inc. and I made this video for the contest we entered to win $25000 and we succeeded. My aunt died having my cousin 14 years ago and we were told she probably had lupus.....so for 13 years, my mother had him repeated tested for lupus until he had another rare disorder come up that she knew my aunt had. Doctors kept misdiagnosing it as well. My mother found a picture on the internet that matched the skin disorder and read that it was associated with EDS. She asked the doctors to test London for both since they described my aunt to a T and on her birthday last year we got the notice that he tested positive for both. We pray that the research project that is under way will result in a treatment for EDS.

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How I've been affected living with Ehlers Danlos Syndrome

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My everyday life with EDS

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Recording a song my grandfather Ronald V. (Bud) Stone Wrote in 1946. "My Love"

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Dedicated to those individuals who have bravely fought a courageous battle with Ehlers-Danlos Syndrome.

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Video is no longer available at the request of Lynn Sanders. Video offered a short excerpt from a US program discussing Ehlers-Danlos Syndrome. To learn more about this genetic disease contact the Ehlers-Danlos Foundation at www.ednf.org

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A short video about my EDS experience, minus most of the facts that you can get off the internet. All about how it changed me and those who helped me through it all. I do mention some stuff about surgery and surgeons which isn't detailed here but I have other videos about that on my channel. Ehlers-Danlos Syndrome is quite a rare group of inherited connective tissue/collagen disorders which cause a broad spectrum of symptoms. It almost always causes great joint pain and frequent dislocations/subluxations (partial dislocations) and often sufferers have stretchy, hyperelastic and fragile skin. Scars do not form properly and wound healing is almost always delayed. There are many other symptoms, but as I say, this video is dedicated to those who have helped me through and its purpose is to relay my story to you, and not tell of the facts of EDS. I felt this way as the facts are usually found on the Internet and people rarely know sufferers of EDS itself, unlike with other diseases which are relatively common. I hope it's helpful and useful and please be sure to check out my blog on www.livelifeloving.blogspot.com - I'd love to hear from you too so do send me a message or leave a comment either here or on my blog! Thanks so much for watching, Steph xx

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Ekkehard Ehlers - A Life Without Fear Genre: Blues, Electronic Style: Abstract, Delta Blues, Experimental

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Ehlers-Danlos Syndrome is managed with proper splinting. These splints hold my thumbs on, made by the best hand therapist OT in the world. I just got them today, they hold all my hand bones in place except my fingers.

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Ehlers-Danlos Syndrome is a connective-tissue disorder and is often undiagnosed. These r some of the symptoms of the disorder. See if you or anyone else has it because you could save someone from suffering from this disease without the proper treatment. I will make another video soon.

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I wanted to explain in more detail and show some of the hypermobility with Ehlers Danlos and how it affects my life as well as all others who have the condition. Thanks again for all the support!

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EDS is a rare genetic condition that affects connective tissue. As part of EDS Awareness Month (May 2011) I made this short film to raise awareness of this disabling, misunderstood and sometimes fatal condition Music : Cornflower -'Calling to Source' (Journey Into Sound)

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Ehlers-Danlos Syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders. It is a progressively debilitating syndrome that can cause loose unstable joints which dislocate easily, skin fragility (tears and bruises easily), and/or organ fragility (major organs, veins and arteries can spontaneously rupture). EDS affects about 1 in every 5000 people; however it is grossly under- and/or mis-diagnosed: some 80% of people with EDS do not receive a proper diagnosis or treatment within their lifetime. We are working to change this statistic by raising awareness of this disorder within the medical community and in society at large. The EDNF is a 501(c)(3) nonprofit organization. www.ednf.org [Always check with your doctor - my posts should be considered my informed personal opinion which does not necessarily reflect the official position of the EDNF or any other organization or person concerned with Ehlers-Danlos Syndrome.]

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Ekkehard Ehlers - Plays Cornelius Cardew Label: Bottrop-Boy Catalog#:B-BOY 010 Format:Vinyl, 7", Single Country:Germany Released:2002

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A video I made on November 23, 2009 about my Hypermobility Syndrome (possible Hypermobility Ehlers-Danlos Syndrome) and my Fibromyalgia pain. I discuss hydrotherapy (also known as water therapy), visiting the geneticist in December, and warn about flu shots. Please read my blog at ladyoftheozarks.blogspot.com where I discuss living with chronic pain on a daily basis.

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Hi, I'm Amy, and I deal with three chronic conditions: Ehlers-Danlos Syndrome Hypermobility Type, Fibromyaglia, and Epilepsy. This video is an update about my EDS and Fibromyalgia. I am seeing a new doctor, Dr. K, at the end of April. I have been in a lot of pain lately, which causes depression. To top it all off I feel ignored and not taken seriously by my doctors. My quality of life is lower than I want it to be and I have mobility issues in addition and greatly due to chronic pain. Please visit my blog at ladyoftheozarks.blogspot.com According to the To learn more about Ehlers-Danlos Syndrome, which is a genetic connective tissue disease, please visit http:ednf.org and to learn more about Fibromyalgia please visit chronicfatigue.about.com. Thank you for watching and please remember to subscribe.

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*WARNING*: The inheritance is autosomal, but some marked here as recessive are actually dominant. Genetics Project.. They won't forget EDS when they're doctors. I was successful. No one was texting.

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With this video, I aim to raise awareness about Ehlers-Danlos Syndrome. It is a seriously under-diagnosed condition and treatment options are limited, as most GPs just barely know what it is. More often than not, I find myself explaining to THEM what EDS is and how it affects me. Each type of EDS varies in severity from person to person. Some cases are so mild that they have little or no impact on a person's life -- however, these people still risk passing on a more severe form to their children. Please let me know what you think of this video -- especially if you or someone you know has EDS =]

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***PLEASE NOTE THAT YOU MAY HAVE TO PAUSE IN ORDER TO READ THE CAPTIONS ON THE PICTURES*** This is a video to show how Ehlers-Danlos Syndrome or EDS Hypermobility Type (formally known as Type 3) is tested. It's called the Beighton Scale. In this video, you will see me showing several things that the Beighton Scale will be scored by. If you think you may have EDS or have symptoms of it, please contact your PCP or local geneticist (geneticist is the one who is the best person to diagnose you). Also, this video promotes my Facebook group - Zebras for Life. Please feel free to request to join by searching it up! We welcome all who have EDS, Chiari, POTS, Fibromyalgia, Dysautonomia, etc. :)

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This is about me living with a connective tissue disorder, Ehlers-Danlos Syndrome! Day to day living is very difficult, but with the support of friends, loved ones and my awesome doctors I can make my life meaningful!!

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An update on my Ehlers Danlos Syndrome. Thank you all for your support! My hope is to bring more awareness to this rare condition.

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Diagnosed with fibromyalgia, chronic fatigue syndrome, lyme disease, myofascial pain dysfunction, lupus, or another spectrum disorder but still have unexplainable symptoms? Most people with Ehlers-Danlos Syndrome are first misdiagnosed as having one of these conditions. 80% of people with EDS go undiagnosed for their lifetime. Please go to www.ednf.org to download information to take to all your doctors, schools, gyms, etc. whether you have EDS or not. [Always check with your doctor - my posts should be considered my informed personal opinion which does not necessarily reflect the official position of the EDNF or any other organization or person concerned with Ehlers-Danlos Syndrome.]

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Produced by the National WWII Museum in New Orleans

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In this interview Spiritual Teacher Hanna Ehlers discusses her decision to leave her home and take her teachings and workshops on the road. She discusses the Great Shift and the New Earth which is forming and some of the insights she has had and the guidance she has received about our planets growing consciousness. If you wish to enquire about having a New Earth Ascension Workshop for your group or organisation contact hanna@lightworkersunite.co.uk

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This video is a reaction to my new diagnosis of Ehlers-Danlos Syndrome, Hypermobility Type. Please visit my blog at ladyoftheozarks.blogspot.com According to the Ehlers-Danlos National Foundation at bit.ly "Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a "glue" in the body, adding strength and elasticity to connective tissue."

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Did you know...Ehlers-Danlos Sydrome (EDS) can affect as many as 1 in 5000 people. Did you know...there are 7 types of EDS with Hypermobility, Classic, and Vascular being the most common. Did you know...Classic EDS is characterized by elastic, soft, and doughy skin, unusual scarring and loose joints. Did you know...Hypermobility EDS is characterized by loose joints and chronic joint pain. Did you know...People with Vascular EDS are predisposed to rupture blood vessels and hollow organs, joint laxity, easy bruising, abnormal wound healing, and translucency of skin. Did you know...EDS research is being done by Dr. Hal Dietz at Johns Hopkins. Rarely are people given the opportunity to directly fund a treatment for such a devastating disease--a disease that has no cure or treatment. For more information about EDS or to make a donation, go to www.ehlersdanlosnetwork.org or http today.

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Splints/Braces are highly effective in stabilizing joints in those with EDS. This is not limited to splints for large joints like knees, but also small joints like fingers.

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In this episode, it shows all the braces I wear, some things that help manage my pain, my back surgery scar,etc.

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Perspectives on disability - Song: "Skeleton" by Kate Nash

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Travel with EDS

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TheSpiritGuides.co.uk Listen to our 30 minute talk using the audio player above. When higher self calls, we must be ready to trust and act, this has not been easy, but Hanna understands the importance of this symbolic statement as she knows in the future many will be without homes and in a place of chaos because this will not have been their choice. Now a little more used to the idea, Hanna finds embarking on this divinely orchestrated move, incredibly fun and liberating. This will mean many more people will benefit and be able to take part, which is the main importance, to be able to offer nomadic accessible spiritual teachings for all those in need.Writing her book as she goes and with suitcase in toe, Hanna will live on donations and the kindness of others, leading by example of the New Earth energies. The workshops are for all and bring deep healing and support from the group journey, which helps us better understand our personal changes and teaches us how to prepare for this new world coming and the end of the old. Additionally Hanna channels the Atlantean teachings passed on through the indigenous peoples, of which Hanna has memories of her incarnations and is further guided by the White Brotherhood on the inner plane. "Currently I don't know where I am going to be in three weeks time, I'm waiting for those who want my healing message! If you are a group of people or organisation who wish to receive this workshop please contact Hanna and the Lightworker Team to <b>...</b>

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I have completed hand therapy, and have other things that have helped make my life with Ehlers Danlos much easier to deal with on a daily basis. I also want to share some important features and symptoms of Ehlers Danlos Syndrome type 3 (hypermobile type).

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I got a new longboard and I got to choose the colors and customize it. I recommend this for beginners. It was $85 total with shipping. www.ehlerslongboards.com

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music -- love at the end of the world by sam roberts, vicarious by tool, blood & thunder by mastodon, wake the sun by the matches

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