EDS Alert Newsletter No. 20

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.

+Alert: Ehlers-Danlos National Foundation – 2008 Conference Information & Registration

+ Blog: A Period of Denial

Blog: Being disabled at the age of 28 was not in my life plan

Blog: EDS & Paying It Forward

Blog: EDS and FIOS

Blog: Friend Passed Away from EDS

Blog: I have a suspicion that this is what the doctors would call the ‘fatigue’ portion of HMS/HEDS. Woo.

Blog: What is up with this ‘benign’ hypermoblity name?

Blog: Yoga Therapy

Blog: pain management program, day one

Blog: pain management program, day two

Blog: thanks to EDS I dislocated the right side of my jaw

+Disability: Disability Lawyer Volunteers at Long Island MS Society

+Forum- Genetics & HMS/EDS

Forum: EDS III without skin issues????

Forum: Hypermobile vs hyperflexible?

Forum: Is ‘Happy to be alive’ good enough?

Forum:Wanted to share this…a letter I wrote over the summer about EDS

+Medical: Asthma and airways collapse in two heritable disorders of connective tissue

Medical: Lyrica May Relieve Fibromyalgia Pain(-)

Medical: Oral Manifestations of Ehlers-Danlos Syndrome(-)

Medical: Two Cases of Traumatic Wounds in Patients with Ehlers-Danlos Syndrome Successfully Treated with a Bioengineered Skin Equivalent -Wounds(-)

+News: Docs, patients sue over ban on suicide aid(-)

News: Marfan: His daughter’s DNA : Nature News(-)

News: Lady Lake resident needs surgery to relieve the effects of rare genetic disorder

News: Student With EDS & Classroom Accomodations

News: Two terminally ill Montanans file right-to-die lawsuit

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.

EDS Alert Newsletter No. 19

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: Ehlers Danlos Video (This is the syndrome I have)
+	Blog: Bye-Bye Body Part – EDS and my Appendix
+	Blog: Dr Freak Clinic (EDS)
+	Blog: Just call me stretch – had always assumed, from my own research, that I had a mild form of Ehlers Danlos Syndrome (EDS)
+	Blog: gastric reflux – Gone Natural, Now Cured
	Blog: mystery diagnosis (EDS & Chiari)
	Blog: My spine isn’t supposed to bend that way!Which way?
+	Blog: *Patients that have Lupus are often misdiagnosed with EDS or Marfan.
+	Blog: Bendy Girl Interview
+	Blog: Can you spare a vote?(-)
+	Blog: Dog With EDS
	Blog: Done running
+	Blog: EDS First Appointment
+	Blog: EDS &Physical Therapy
	Blog: EDS and Health Insurance: Should I Avoid Diagnosis For Health Insurance Purposes?
+	Blog: Ehlers-Danlos Syndrome (techyum)
+	Blog: Good News: my type of EDS is NOT Vascular,
+	Blog: Hypermobility(-)
+	Blog: I Can Not Be Cured
	Blog: I saw the ‘new’ Thoracic Surgeon again…EDS
	Blog: I went to the local health centre today…EDS
	Blog: Introduction, EDS type 8,
	Blog: Invisible Illness Week Hypermobility
	Blog: It has a name…… EDS
	Blog: Making a start-about me and my conditions…hypermobility
+	Blog: NHS Dentistry Problems with teeth and gums are common to those with EDS.
+	Blog: The Wheelchair Service – Part 1
	Blog: Visit to the rheumatologist: aka how not to scream (just)
+	Blog: What Exactly is a Chiari Malformation?
+	Blog: When injury is the practice: working with what is (EDS and yoga)
	Blog: eds thoughts.
	Blog: have an inherited connective tissue disorder, Ehlers-Danlos syndrome, which leaves me susceptible to diverticular disease.
	Blog: non-specific connective tissue disorder that lies somewhere between Ehlers-Danlos Syndrome & Osteogenesis Imperfecta
	Blog:The big hospital appointment with Professor Graham
	Disability: Bingaman Introduces Three Bills to Strengthen Medicare
+	Disability: Disability applicants decry speedy exams(-)
	Disability: Long Term Disability – Structural conflicts of interest – standard of review ERISA
	Disability: New Test for Chronic Fatigue Syndrome Will Help Long Term Disability Claims
+	Forum: Medical Pictures of EDS Patients
+	Forum: Question about MRI findings. – BrainTalk Communities
	Forum: gastroparesis secondary to Ehlers-Danlos Syndrome,
+	Medical: News about vascular-type Ehlers-Danlos syndrome(-)
+	Medical: Ehlers-Danlos Syndrome Case Study- New England Journal Medicine
+	Medical: Ehlers-Danlos Syndrome Treatment Options
	Medical: free continuing, distance learning course designed for primary care physicians on different types of chronic pain.
	News: 11-year-old uses baseball to fight condition (EDS)
+	News: Acupuncture is best way to treat back pain, study finds
	News: Father of EDS Girl Attacked
	News: How one man conquered chronic pain – CNN.com(-)
	News: October Meeting of EDNF Phoenixmetro
	News: Petition to: CREATE A FUND TO RESEARCH ‘EHLERS DANLOS’.(-)
+	News: The guilt of a mum – Hartlepool Mail
+	News: Wisconsin woman leads fight for medical marijuana

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.