Archive for June, 2007

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EDS Alert Newsletter No. 12

June 29, 2007

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: FYI – Circus Freaks(-)
Blog: EDNF Conference is announced for July 2008 (Houston)
Blog: EDS & Birth Control
Blog: EDS & Health Ins Choices
Blog: EDS & Slow Healing & MD Communication Issues(-)
Blog: EDS Type 4 (Vascular)?
Blog: My appointment at the Multidisciplinary Pain Clinic(-)
  Blog: Update – Classical Form Of EDS
  Disability
  Disability: Long Term Disability Insurance Claims, Frequently Asked Questions
  Medical
  Medical: Causes and Symptoms of Gastroparesis
Medical: Arthritis Foundation Entry On Ehlers-Danlos Syndrome (EDS)(-)
Medical: Dental Issues With EDS(-)
Medical: EDNF Medical Resource Guide (MRG)
Medical: EDS Today Newsletter No 8 (Fall 2003) – Lead articles Depression & Survival of an Aortic Trauma Patient with Ehlers-Danlos Syndrome type IV: A Case Report
Medical: Ehlers-Danlos Syndrome Overview – NYU Medical Center, NYU Hospital, New York, NY
Medical: Study Shows Surgery Is More Effective Than Other Treatments for Common Back Problem, June 28, 2007 News Release – National Institutes of Health (NIH)(-)    
  News
News: 1st U.S. Drug Approved for Fibromyalgia – Forbes.com
News: ButYouDontLookSick.com INVITE A FRIEND DAY!
News: David Daniel Bowen III Memorial Award – EDS

We 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.

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Medical: Dental Issues With EDS

June 29, 2007

Articles about Dental care and EDS are often hard to find. Here are a few that are online.

Orthodontic Care for EDS Type 4
Mandibular Joint, Orthodontic and Dental Findings in EDS
EDS & Oral Symptoms: a questionnaire

Here are excerpts from another article:
Orthodontic Treatment Considerations in Ehlers-Danlos Syndrome By
Louis A. Norton, D.M.D., Professor of Orthodontics

[snip]
Extreme joint hypermobility in many EDS patients often leads to chronic
dislocation of the temporomandibular joint. This makes the placement of
complex orthodontic appliances very troublesome for the patient and the
clinician. In addition, the oral surgeon must be extra cautious to prevent
a dislocation of the mandibular condyle when performing a surgical procedure
in preparation for orthodontics. Because of the tissue repair problem in
EDS, there may be slow healing after dental extractions, followed by soft
tissue scarring. The orthodontic appliance used on an EDS patient should be
very smooth and relatively simple in design. The oral mucosa are very
fragile, liable to injury and particularly vulnerable to sharp objects such
as orthodontic appliances or partial dentures.

[snip] The mobility of teeth during tooth movement may be greater than normal.
This may be caused by stretching, tearing and slow repair of the fibres.
Similarly, the gingiva may be more prone to inflammation and possible
recession. There may have been reports of early onset of some periodontal
defects (gum and tooth support). Classical type EDS in particular is
characterized by extreme periodontitis which can be quite debilitating.
With the added dental mobility of the teeth, slowed repair processes and
poor organization of tooth supporting tissue collagen, the need to wear
retainers long after completion of the case may be greater.

A full copy of this article can be ordered here

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Medical: EDNF Medical Resource Guide (MRG)

June 24, 2007

The US based Ehlers-Danlos National Foundation (EDNF) has a new one page Medical Resource Guide (MRG) to give to your MD. It is one of the best I’ve seen with not only diagnostic criteria but actual treatment suggestions: among them an echocardiogram every *2* years for all EDS patients and a baseline bone density scan as soon as you are diagnosed.

If you’re a member of the EDNF you can get a free copy here (you also gain access to the forums with your membership). If you’re not a member you can order one for 50c plus mailing. Go here.

I also have a few free copies (10) so drop me an e-mail with your snail mail address and I will mail them out to you. I can include a handout to give to coaches and trainers to help them spot people with EDS. School coaches are often the first to notice something is wrong with students who injure themselves repeatedly. Let me know if you want a copy of the School Coaches Handout in your e-mail.

Finally, the EDNF site also offers free medical articles and information

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EDS Alert Newsletter No. 11

June 22, 2007

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 Awareness
Blog: EDS Me
Blog: EDS & Mitral Valve Prolapse
Blog: EDS, Pain & Diet
Blog: Ehlers-Danlos Syndrome (Type III) and IUD(-)
Blog: Hypermobility Syndrome
Blog: Living In The UK, Struggling To Get Treatment For EDS

Disability
Disablity: MetLife to Take Over Unum Long Term Disability Claims? The New York Disability Law Blog(-)

Medical
Medical: EDS &Osteoporosis
Medical: EDS Today Newsletter No 7 (Spring 2003) – Lead article Urinary incontinence and pelvic organ prolapse in women

News
News: ‘Mo,’ a film about Marfan Syndrome, at ‘Drive-In’ – Newsday.com(-)
News: Age Of Father May Lead To Increased Risk For Marfan Syndrome
News: Hypermobility – Headaches, fatigue tied to kids’ unexplained pain: Scientific American

Video
Video: EDS & Chiari Malformation (click on EDS Conference Link, Requires Windows Media Player)
Video: EDS Overview ‘Everything is Beautiful and No-one hurts’

We 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.

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Video: EDS Overview

June 21, 2007
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Medical: EDS

June 21, 2007

The Hinge, a short monthly newsletter, is one of the many benefits of joining the US EDNF organziation. Here is an excerpt:

“Check Up On Your Bones,” an interactive bone health tool for people of all ages, is available on
the NIAMS website. The goal of the checkup is to help users identify the most common red flags
that put their bones at risk and to give strategies specific to individual users to make their
bones stronger and healthier. Since osteoporosis is a major factor for those of us with EDS, this
is a great way to get some helpful information:
http://www.niams.nih.gov/bone/optool/index.asp

You can join EDNF here

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EDS Newsletter No. 10

June 16, 2007

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: Band Astrid Haven Supports EDS Petition

Blog: EDS – Those Days Without Pain

Blog: EDS & Pain

Blog: EDS and Pain – Getting back on my feet again… – In the beginning.

Blog: EDS And Scooters

Blog: Ehlers-Danlos Memorial Tribute

Blog: Help Spread Awareness of Ehlers-Danlos Syndrome (EDS)

Blog: How I learned we had EDS

Blog: I was diagnosed with Hypermobility disorder last month

Blog: Learning How To Use The Wheelchair by bunny_no_hoogle

Blog: Off To NIH For EDS Study

Blog:EDS and evaluating my next steps

Bloge: Marfan Syndrome Explained

Medical

Medical: Joint hypermobility and genetic collagen disorders: are they related? (full article free with registration)

Medical: Benign Joint Hypermobility Syndrome: Evaluation, Diagnosis, and Management

Medical: Joint hypermobility by Prof Bird

Misc/News

Misc: YouTube – Update on Me and My Life: EDS & Hip Problems

News: Unintended overdose deaths rise sharply(-)

We 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.

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EDS Newsletter No. 9

June 8, 2007

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: And the rain was my tears…another life lost to EDS twocats

Blog: Congrats to the New UCLA Doctor(-)

Blog: Diagnosis EDS Type I slveredmane

Blog: EDS & Pain Management

Blog: EDS and Labels by bunny_no_hoogle(-)

Blog: Same old same old – being disabled is like ‘Groundhog Day’

Disability/Legal

Disability: Support Groups for Social Security Disability Claimants : The New York Disability Law Blog(-)
Legal: Can Pain Be The Main Limiting Factor In A Disability Claim?

Medical

Medical: EDS Today Newsletter No 6 (Fall 2002) – Lead article: Prevalence of Aortic Root Dilation in the Ehlers-Danlos Syndrome

Misc/News

Misc: EDS SYMPTOMS II Trial – Survey

News: Site of the Day: Ehlers-Danlos Syndrome(-)

We 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.

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Legal: Disability Claims – Can Pain Be The Main Limiting Factor?

June 5, 2007

I found this legal case to be interesting to EDS patients. First some
background – if you have an employer paid disability plan, the plan is
governed by US pension laws called ERISA. Those laws give the
disability plan a lot of discretion – they basically need only to show
that their decision to deny you befits is reasonable. And you cannot
get punitive damages so even if they wrongly deny you benefits, they
lose nothing beyond your actual benefits. As you can see there
are advantages to automatically denying employees long term disability
and the forcing employees to fight it out in court.

In this
Northern District California case, a employee had carpal tunnel
syndrome. Her disability was not one that showed actual damage -
basically, the doctors, realizing that pain was her main limitation,
advised her to restrict her activities. The disability company denied
her benefits because, among other reasons, there was no evidence of
damage and pain was her main limiting factor.

This happens a lot
with people with EDS – we dislocate and subluxe but often there is no
damage evident. But because of our hypermobility, we have a lot of
pain.

There
is no factual dispute that Wood was diagnosed with carpal tunnel
syndrome in 1999,that she underwent spinal surgery in 2000, and that
she continues to suffer pain and numbness in her hands to this day. The
reports of all of the physicians who actually examined or treated her
support her disability claim, with the exception of the report of
Dr.Teitel, who examined Wood at the Plan’s request when she sought
first phase LTD benefits. Even Dr. Teitel did not find that Wood was malingering or exaggerating her symptoms.
He
stated that the recommendations of Wood’s treating physicians
were’appropriate in terms of limiting her discomfort but not an
absolute limitation because it is not clear that these activities will
produce damage to tendons, joints, muscle or nerve.’ The policy’s
definitions do not, however, exclude disability on the basis of pain
and do not require that activities cause damage to tendons, joints,
muscle or nerve before they qualify as limitations.

Dr.
Ito, the Plan’s consulting doctor who did not examine Wood, did not
dispute Wood’s diagnoses or the findings of pain, weakness and numbness
documented by numerous doctors over time. However, Dr.
Ito apparently discounted Wood’s pain limitations on the basis that
they were not supported by objective testing. The policy’s definitions
do not require the type of direct test support that Dr. Ito apparently
required to support Wood’s pain complaints and other limitations.”

Note
the key here is ‘what does the policy say.’ I would think that if you
have a medical report that shows exactly how much hypermobility you
have (supported by an actual test – ‘look I can bend her elbows
backwards, isn’t that freaky?”) you’d have your objective medical
evidence. That coupled with consistent MD reports about pain seems (to
me) to be a strong claim. But what do I know, eh?

Complete article here:
(also this is not legal advice – check with a lawyer if you need advice on your disability claim)

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EDS Newsletter No. 8

June 1, 2007

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 and other health issues – a lonely journey « Que sera, sera(-)
Blog: “letter for normals” family & friends/living with disablity
Blog: A year ago on May 26, 2006 I was diagnosed with Ehlers Danlos Syndrome.
Blog: BJHS/EDS-related back pain naturalliving
Blog: BJHS/EDS-related back pain(-)
Blog: EDS & Coping
Blog: EDS & hand surguries: Why Surgery?(-)
Blog: EDS & House TV Show – a rebuttal
Blog: EDS & Measuring Pain Levels
Blog: EDS and GI Problems?
Blog: EDS featured on “House M.D Sign The Petition deathofone
Blog: EDS Type 4 (Vascular)
Blog: Ehlers-Danlos Syndrome Type 4
Blog: Help Get Ehlers-Danlos Syndrome Featured On The TV Show House
Blog: I was just diagnosed with EDS Type 4
Blog: My Space What Is EDS?
Blog: Painted Threads: 7 random things about me(-)
Blog: People Need To Know About EDS by bunny_no_hoogle(-)
Blog: Sad To Lose A Friend To EDS Disability/Legal

Disability: Allsup Inc. Reviews The State of Social Security Disability Insurance (SSDI) in 2007(-) Note: Allsup is a company that has close ties to many employer disability programs. Some claim that in working with them to file for SSDI, you increase the risk that your employer disability insurance will be canceled using the info they gain. Others disagree.
Legal: The Operations of Third Party Insurance Administrators – how they are run, staffed, marketed and the like Medical

Medical: Dysautomia & Hypermobility Syndrome
Medical: EDS and Speech and Language Issues
Medical: EDS Today Newsletter No 5 (Spring 2002) – Lead article: Oral Manifestations of Ehlers-Danlos Syndrome Misc

Misc: EDS Podcast Is Now Online at http://ehlersdanlos.podomatic.com/?badge=1
Misc: EDS Products Survey – any consistent medicines or treatments that worked with different types of EDS.
Misc: Hypermobile EDS – One Question Survey (EDNF Survey)

News
News: New Research Into Pain Treatment – Newsweek Health – MSNBC.com(-)
News: YouTube – Welcome To My EDS Youtube Site by Mags(-) 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.