EDS Alert Newsletter No. 23

This is our monthly round-up of information about Ehlers-Danlos Syndrome (EDS). If there is not enough material to create a newsletter, the posts may end up occurring quarterly. For more information about me and this newsletter, please look here for Sources of Medical Info and Support Groups.

• Blogs/Online Diaries
  
• Blog: Additional Reasons for Stretch Marks
• Blog: Diagnosis!
• Blog: doctor in Marin who understands EDS?
• Blog: Don’t let me suffer any more
• Blog: Ehlers-Danlos in dogs
• Blog: gastric bypass (for which I am not eligible because of the complications caused by EDS
• Blog: how doctors treat us sometimes; the list goes on and on for ways doctors find not to treat us.
• Blog: I have limited time left before there begins the 5 weeks of immobility.
• Blog: It was only when she was in Year11 that her rare condition was diagnosed as Ehlers- Danlos Syndrome.
• Blog: Life with EDS: surprises around every corner!
• Blog: Life with Enigmatic Illnesses – CFS, EDS, and more: Are YOU Bendy Too?
• Blog: Life’s not all plain sailing
• Blog: Moving Along – Done with PT! START NEW
• Blog: One particular Zebra is Ehlers-Danlos Syndrome (EDS),
• Blog: only physiotherapist that knows how to treat people with Ehlers-Danlos Syndrome.
• Blog: Our Journey with Ehlers-Danlos Syndrome: Things to Take Note of(-)
• Blog: Pensioner with EDS gets help with dog’s $5000 chemo treatment
• Blog: Silver Ring Splints – on a Child(-)
• Blog: skinny_hobbits: Hello everybody, nice to meet you all!!
• Blog: Surgery Date Finally Set…3 Months Late
• Blog: UPDATE: Pain Management Doctors = A Sobbing Bunny
• Blog: Well this is my first post.
• Blog:what it takes for me to just go to another persons house to watch TV.

• Disability
• Disability: CBS News investigation sheds light on disability benefits rejections(-)
• Disability: CBS News Special Report on Social Security Disability Claim Backlog
• Disability: Long Term Disability in the NFL

• Forums
• Forums: Lists Of EDS Info

• Legal
• Legal: The Meaning of Arbitrary and Capricious Review (long term disability)
• Legal: Why You May Want to Appeal a Social Security Disability Denial to the US District Court in Virginia

• Medical
• Medical: Fatigue Disorders: Connective Tissue Disorder(-)

• News
• News: “Brave Angela has had life of painful struggle”(-)
• News: 11-year-old uses baseball to fight EDS
• News: After a Multitude of Tests, an Answer From Grandmother’s Memory – New York Times(-)
• News: Amy’s life has been transformed
• News: angel denardi_ ‘a very simple person with simple dreams’
• News: Bismarck Tribune – Columnist Has Vascular Ehlers-Danlos
• News: Brave Angela has had life of painful struggle – Huddersfield Examiner(-)
• News: Brooke – Teen Fights Rare Disorder
• News: Bruschi is stroke survivor’s inspiration – Braintree, MA – Braintree Forum(-)
• News: Chronic pain sufferer Claire Phipps tells her story | The Guardian | Guardian Unlimited(-)
• News: Danny, 8, to be special at grand prix
• News: EDS has not stopped Tracy from pursuing her twin loves of horses and working with children.
• News: ehlers-danlos syndrome-a mother’s burden
• News: Escondido community rallies around little girl’s struggle – North County Times – North San Diego and Southwest Riverside County News(-)
• News: For some, it’s a comfort to find a name, if not a cure | HamptonRoads.com
• News: Helping Dudley (Nova Scotia Woman With EDS)
• News: Hope for teenager with ‘elastic’ bones(-)
• News: Hospital mates show courage – Local – General – The Recorder(-)
• News: Las Vegas City Life(-) A day in the life of Cathe Boudreau Alleger
• News: Looking at chronic illness from an adult’s point of view – Health – www.smh.com.au(-)
• News: Plano teen finds purpose in illness that forced her to quit sport | Dallas Morning News(-)
• News: Richmond/Central Virginia Chapter of the Ehlers Danlos National Foundation meeting
• News: Teen overcomes odds to be karate champ
• News: The pain of being able to bend my body like a contortionist – icWales
• News: THIS INCREDIBLE ILLNESS DRIVES ME ROUND BEND(-)
• News: Woman doesn’t let multiple disabilities get her down(-)

We only link to publicly accessible entries and websites. If you would like your post removed from this newsletter please drop a comment below or e-mail us at: edsalert@gmail.com. Please remember when you’re visiting people’s personal blogs or diaries that these often contain information of a personal and sensitive nature and to respect their privacy and concerns. We only quote excerpts from articles that require subscriptions or paid memberships to access.

EDS Alert Newsletter No. 22

This is our monthly round-up of information about Ehlers-Danlos Syndrome (EDS). If there is not enough material to create a newsletter, the posts may end up occurring quarterly. For more information about me and this newsletter, please look here for Sources of Medical Info and Support Groups.

Blogs/Online Diaries

• Blog: Why I need a butler…or a bouncer
• Blog: hypermobility form of Ehlers-Danlos Syndrome with the classical form
• Blog: Blue Cross Blue Shield Wellmark ROCKS!
• Blog: Daily Management of EDS, Marfan, Sticklers Syndromes(-)
• Blog: Deadlines TODAY for EDS Fundraisers and Ongoing Ways to Help – Mags MySpace Blog(-)
• Blog: Ehlers-Danlos Syndrome as cause for back pain. New Diagnosis from …
• Blog: Feet and EDS/hypermobility (and a little archery babble on the side) « Of Code and Cats(-)
• Blog: I have EDS, hypermobility type, and I’ve having been a bad last few weeks,
• Blog: I’ve been sitting here thinking about marfan syndrome. and how I still doubt myself.
• Blog: I’ve had a middle aged moment, and it was nothing – EDS
• Blog: Joint Hypermobility Syndrome & fibromyalgia
• Blog: Kristen’s Journey | To get through the hardest journey we need to only take one step at a time but we must keep stepping(-)
• Blog: Marfan News Blog(-)
• Blog: New to the group but not the one with EDS
• Blog: Note to self: don’t let geneticists examine my hands
• Blog: Skin Healing & EDS
• Blog: The top ten unexpected benefits of hypermobility/connective tissue disorders.
• Blog: hunting for zebras
• Blog: totally official now. I have Genetical Hypermobility
• Blog:If you hear hoofbeats, think zebras

Disability/Legal

• Disability: New York Times Reports on Social Security Disability Claim Crisis
• Disability: Disability Cases Last Longer as Backlog Rises – New York Times(-)

Forums/Public Discussions

• Forum: Advice on Hip Subluxations?
• Forum: Ehlers Danlos Info Links List(-)
• Forum: Immunizations and EDS?
• Forum: Opiate/pain med tolerance?
• Forums: Ehlers-Danlos Syndrome – Hyperflexibility – Change of DNA – EFT Community(-)

Medical

• Medical: Ehlers-Danlos Syndrome Mimicking Mesenteric Vasculitis: Therapy, then Diagnosis — Bloch et al. 12 (4): 527 — Journal of Vascular and Interventional Radiology(-)
• Medical: Ehlers-Danlos Type IV in Pregnancy(-)
• Medical: Gastrointestinal Disorders in Patients with Hypermobile or Classical Ehlers-Danlos Syndromes.(-)
• Medical: The Medical Minute » MMP088: Ehlers-Danlos Syndrome(-)

Misc

• Misc: Ehlers-Danlos Search Engine

News – EDS In The News

• News: Boy brings holiday cheer to hospital(-)
• News: Artist’s creations offer therapeutic respite(-)
• News: Defying the Challenges of Being Physically Challenged(-)
• News: Missouri adoptees hope for better records laws – EDS Type 4
• News: Woman With EDS Evicted
• News: Woman helps others during her own time of need

We only link to publicly accessible entries and websites. If you would like your post removed from this newsletter please drop a comment below or e-mail us at: edsalert@gmail.com. Please remember when you’re visiting people’s personal blogs or diaries that these often contain information of a personal and sensitive nature and to respect their privacy and concerns. We only quote excerpts from medical articles that require subscriptions or paid memberships to access.