EDS Newsletter No. 7

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: EDS & The Cold

+ Blog: EDS an overlooked hereditary disorder

+ Blog: EDS Diagnosis (How To Be A Happy Camper In A Few Easy Steps) by suelikesblue

+ Blog: EDS Diagnosis Confirmed

+ Blog: EDS Fundraising Using Avon Products

+ Blog: EDS Isn’t Just About The Joints by bunny_no_hoogle

+ Blog: Gardening With EDS – The “Bearister” Bookcase

+ Blog: May Is Ehlers-Danlos Syndrome (EDS) Awareness Month – Please HELP!

+ Blog: New Topic 501 – Ehlers Danlos Syndrome

+ Blog: Newly Diagnosed With EDS Type 3 by Geneticist raina_layn

+ Blog: Pregnant With EDS Type 4 – Looking For Fellow EDSers To Chat With lil_miss7

+ Blog: Recollections: Hypermobility Syndrome

+ Blog: Spoon Theory & Keeping Up With Friends subluxate

Disability

+ Disability: “Filing for Disability, but Finding Discouragement”.

Medical

+ Medical: Cognitive Behavioral Therapy (CBT): Self-Talk – What We Say to Ourselves Affects How We Feel

+ Medical: EDS Today Newsletter No 4 (Fall 2001) – Lead article: The Prevalence of Non-Surgical Complications in the Ehlers-Danlos Syndrome

+ Medical: GI Issues: Intestinal Perforation in Ehlers-Danlos Syndrome After Enema Treatment for Constipation.

Misc/News

+ Misc: Myspace.com/EhlersDanlosSyndrome Bulletin Board

+ News: Nevada Total Fitness Athletic Club in fundraising benefit for teen with EDS

Video

+ Video: YouTube – EDser Picture Diary of Visit To Great Ormond Street Hospital London For PT

+ Video: YouTube – Ehlers-Danlos Syndrome video by Yomags

I only link to publicly accessible entries and websites. If you would like your post removed from this newsletter please drop a comment below. 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.

EDS Newsletter No. 6

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

Blog: 3 years ago my husband died from a rare genetic disorder called Ehlers-Danlos vascular type by enchantedhollowbiz

Blog: EDS & benign, hypermobile type. Benign my ass.
Blog: EDS & Chiari Syndrome: Triple Threat

Blog: EDS & Insomnia (spoils all the fun) by deathofone

Blog: EDS and Dysautomia

Blog: EDS and hip problems annekrogers

Blog: Extreme Sports Injuries While Watching TV – Just A Typical Day With EDS ghymoreid

Blog: family issues in adjusting to EDS and understanding my chronic pain. by deathofone

Blog: Girl, Dislocated: D.I.Y. Management of E.D.S.

Blog: Got Hope (I BELIEVE I WILL HELP LEAVE THIS WORLD BETTER THAN WHEN I CAME INTO IT!)

Blog: Hypermobility & Pain Management Options chronic_pain

Blog: Hypermobility syndrome and pain by ricerurouni

Blog: Mags Personal Journey Into EDS And Volunteering For The National EDS Foundation by yomags

Blog: May is EDS Awareness month by kitytize, I Have Vascular EDS Type 4

Blog: May Is National EDS Awareness Month by yomags

Blog: my appointment at the hypermobility clinic by Selenay

Blog: Pain Treatment Suggestions subluxate

Blog: Pregnant With EDS Type 4 – Looking For Fellow EDSers To Chat With lil_miss7

Blog: Why I refuse to use another airplane lavatory ever again by Girl, Dislocated

Disability/Legal

Disability: Patients struggle with 2 yr Medicare wait

Legal: Social Security Disability and EDS (May be an attorney ad)

Medical

Medical: Bilateral Focal Polymicrogyria in Ehlers-Danlos Syndrome (Excerpts Only)

Medical: EDS & Marfan – Disease may not be so rare – Waltham, MA – The Daily News Tribune

Medical: EDS Today Newsletter No 3 (Spring 2001) – Lead article: Bone Density in Ehlers-Danlos Syndrome

Medical: Neurological Issues In EDS: Bilateral Focal Polymicrogyria in Ehlers-Danlos Syndrome (Abstract)

Medical: Neurological manifestations of Ehlers-Danlos

Medical: Neurological presentation of Ehlers–Danlos syndrome type IV

Medical: Scottish Marfan Syndrome Care Guidelines

Medical: SURGICAL SCARS IN THE EHLERS-DANLOS SYNDROME

News

News: Marfan – Family’s 5th Marissa Walk to honor daughter & sister – Sawmpscott, MA

News: YouTube skills-News – Bendy Bodies And EDS

I only link to publicly accessible entries and websites. If you would like your post removed from this newsletter please drop a comment below. 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.

EDS Newsletter No. 5

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.

Blog

+ Blog: Christina’s Bookshelf: Choosing a Vehicle for Special People (like Me) with Ehlers-Danlos Syndrome

+ Blog: Clinical Photos of EDS elizabeth_1990

+ Blog: EDNF Survey Results – Doctor’s Think EDS Is All In Our Head (if you’re a woman)

+ Blog: EDS Can Be Connected To Other Conditions

+ Blog: EDS Spreads Across Multiple Areas twocats

+ Blog: EDS/Hypermobility: Letter To Friends and Family link removed at the request of the My Space Hypermobility Education blog owner

+ Blog: EDS: Managing Expectations

+ Blog: Flexing Joints and Pain Management subluxate

+ Blog: I definitely have Ehlers Danlos Syndrome

+ Blog: Two More Realistic Articles About EDS

+ Blog: What is Ehlers-Danlos syndrome? link removed at the request of the My Space Hypermobility Education blog owner
+ Blog: What is the Hypermobility Syndrome? link removed at the request of the My Space Hypermobility Education blog owner

Charity

Disability

+ Disability: Dr Finds Fibromyalgia Patient Disabled! News At 11!

+ Disablity: Just because one MDs says not all fibro patients are disabled, does not mean you are not

Legal

+ Legal: Using the ADA To Try To Prevent Repayment Of Disablity Benefits

Medical

+ Medical: Aortic Regurgitation Causes(-)

+ Medical: Asthma and HMS/ BJHS or EDS

+ Medical: EDS Today – Spring 2005 Issue11.PDF

+ Medical: IS Hypermobility In Your Head (Dutch article, transl. help needed)
ehlers_danlos

+ Medical: Keratoconus (KC) a non-inflammatory condition of the cornea edsalert

+ Medical: OCULAR MANIFESTATIONS OF EHLERS-DANLOS-SYNDROME
edsalert

+ Medical: Woman Admitted To ER With Chest Pains – A Case For Differential Diagnosis !!!!(-)

News

+ News: Hope in sight for a brave Gauteng boy (Marfan’s)

+ News: May is Ehlers-Danlos Syndrome (EDS) Awareness Month – Download The Brochure

+ News: Woman With EDS – Hanging on to her livelihood(-)

I only link to publicly accessible entries and websites. If you would like your post removed from this newsletter please drop a comment below. 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.

Charity: May Is EDS Awareness Month – Fundraising Link Here