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Welcome To The EDS Alert Newsletter

January 7, 2009

This is a blog that will collect various links about Ehlers-Danlos Syndrome and pull them together into a quarterly newsletter. Please feel free to refer people who have EDS (or want to learn more about EDS) to this blog.

The information in the blog is organized in the form of quarterly newsletters using categories such as Blogs/Online Diaries (people talking about what it is to have EDS), Medical Articles, Disability/Legal issues, News etc. The most recent newsletter is always at the top of the page and you use the “previous entries” buttons at the bottom of each screen to scroll back to look for earlier articles. To read just the newsletters in reverse chronological order click here.

There are several places where EDS patients can locate medical information along with personal tips from fellow EDS patients. Most are free.

As we find new sources, we will update this post – so feel free to bookmark it.

Here the personal overview from one of our volunteers of what it means to have EDS.  If you need to contact us you can do one of two ways: leave a comment to one of the newsletters or drop us an e-mail at: edsalert@gmail.com

If you’ve wandered here from LiveJournal, you can keep track of the EDS Alert Newsletter by going here and adding the newsletter to your Friends List: http://syndicated.livejournal.com/edsalert_gj/

Parental Advisory: Finally, some of the personal blogs and websites we may link to in the course of collecting information about Ehlers-Danlos may contain content that is adult in nature. If you are a parent, please take note of this.

Posting Policies: 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.

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EDS Alert Newsletter No. 32

June 14, 2009

Please feel free to start promoting the EDS Alert Newsletter where ever you think it might help. Note for readers who use RSS feeds – the link to set up your own feed is here.

This is our quarterly round-up of information about Ehlers-Danlos Syndrome (EDS). For more information about me and this newsletter, please look here for Sources of Medical Info and Support Groups.

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.

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EDS Alert Newsletter No. 31

May 11, 2009

Please feel free to start promoting the EDS Alert Newsletter where ever you think it might help. Note for readers who use RSS feeds – the link to set up your own feed is here.

This is our quarterly round-up of information about Ehlers-Danlos Syndrome (EDS). For more information about me and this newsletter, please look here for Sources of Medical Info and Support Groups.

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.

Posted in eds, ehlers-danlos, hypermobility | Tagged , , | 1 Comment »

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Medical: Some Pain Medications May Interact With Anti-Depressants

April 17, 2009

There is one pain medication that carries a possible risk of increasing seizures when combined with anti-depressants.  The medication is known as Ultram or Tramadol (it can also be called Ultracet when it is combined with Tylenol).

This article and this medical alert explains how the interaction can happen – but keep in mind that certain anti-depressants themselves carry an increased seizure risk (ex. Wellbutrin or bupropion) so their combination with Tramadol needs to be discussed with your doctor.

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Medical: Ehlers-Danlos syndrome: associated with prematurity and premature rupture of foetal membranes; possible increase in incidence.

April 5, 2009

An 1966 article in pdf form that discusses the risks/complications of pregnancy and premature birth in patients with Ehlers-Danlos Syndrome. The PDF of the article can be found here

Additional articles can be located using this Google search.

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Medical: So You Think You Have EDS?

April 4, 2009

This is not a medical guide written by medical professionals, but an informal overview published by EDNF members (Ehlers Danlos National Foundation) outlining the range of  medical issues people with EDS may face.  It is a pdf file. Here

Note: you may need to register to view the pdf - registration is free.

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Medical: Pain Medications and Motility? In My Stomach?

March 31, 2009

One of the side effects of pain medications are what we delicately like to call…gastrointestinal issues (GI). They can range from ulcers/inflammation after taking anti-inflammatories (aspirin, ibuprofen) up to and including ’stoppages’ that result from the use of opioids (codeine, vicodin, tramadol).

It is in the second area that patients can find themselves faced with inaccurate information – even from doctors. The rational solution to treating stoppages is to recommend fiber supplements and more water. But that may not work on patients taking pain medications – their problem is that the pain medications paralyze the stomach ‘muscles’ – throwing more ’stuff’ at those muscles can lead to more problems (and in some cases bowel obstructions).  Added to this is that when most doctors think of ‘GI’ complications in connection with pain medications, they only think of constipation. The patient may have other problems associated with opiod use such as delayed gastric emptying (the food stays in your stomach while the rest of the plumbing works fine). Again, tossing more fiber and water into a stomach that cannot process existing food leads to….unpleasant results (gastroparesis).  There is still much misinformation when it comes to managing pain medication side effects.

The solution? This article spells out in detail how to manage GI problems related to opioid use. Simply put – patients should make certain that before they start taking pain medications, that they *are* getting enough fiber and water. Then, as soon as they start taking opioids, they should also take stool softeners every day along with a stimulant laxative every 2-3 days (or as needed.)  And in spite of what many GI doctors claim, the article points out that the use of regular stimulant laxatives to manage opiod side effects will not automatically ‘ruin’ your stomach or bowels and will not make you ‘dependent’ on laxatives forever.

Go here for the full article “Managing Opioid Induced Constipation”

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Forum: Benign Hypermobility Syndrome vs EDS?

March 29, 2009

From the Facebook Ehlers-Danlos Syndrome Forum:

“Professors Bird and Grahame disagree about HMS and EDS hypermobility type. Dr. Grahame suggest they are the same and Dr. Bird believes otherwise….” Read the entire thread here

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Asthma and airways collapse in two heritable disorders of connective tissue (abstract)

March 24, 2009

Asthma and airways collapse in two heritable disorders of connective tissue by A W Morgan, S B Pearson, S Davies, H C Gooi and H A Bird

The purpose of this study  was to investigate whether “there was an increased prevalence of respiratory disorders in both the Hypermobility Syndrome (HMS)/Benign Joint Hypermobility Syndrome (BJHS) and Ehlers–Danlos Syndrome (EDS), compared with the normal population.”

The study concluded that there was: “a significant increase in the frequency of a wide range of respiratory symptoms and reduced exercise tolerance. “   These included “asthmatic symptoms….and atopy….. Pulmonary physiological studies revealed increased lung volumes, impaired gas exchange and an increased tendency of both the lower and upper airways to collapse.”   The study went on to state that  “individuals with HMS/BJHS and EDS have respiratory symptoms in association with various pulmonary physiological abnormalities. The increased … asthma may be due to linkage disequilibrium between the genes causing these conditions or a function of the connective tissue defect itself. In the non-asthmatic population, changes in the mechanical properties of the bronchial airways and lung parenchyma may underlie the observed increased tendency of the airways to collapse.”

(the full abstract is located here)

(and the text of the full article can be ordered here)

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Benign Joint Hypermobility Syndrome: Evaluation, Diagnosis, and Management (abstract)

March 24, 2009

by MAJ Michael R. Simpson, DO, MC, USA From the US Army Health Clinic in Darmstadt, Germany.

This article may of particular interest to both patients and doctors in the Armed Forces.  However the article’s observations are universally applicable.  The study focuses on benign joint hypermobility syndrome (BJHS) which it defines as a “connective tissue disorder with hypermobility in which musculoskeletal symptoms occur in the absence of systemic rheumatologic disease.” The purpose of this study is to point out that while BJHS is well known and has been often discussed “in the rheumatology and orthopedic literature, it has not been discussed in the family medicine literature.”  Why is this important?  Because, as the article explains “most patients with musculoskeletal complaints are first seen by family physicians.”  With primary care physicians as the first line defenders against this disorder, they need to be familiar with recognizing and diagnosing BJHS. And because patients “chief complaint is joint pain”, this means that “BJHS can be easily overlooked and not considered in the differential diagnosis.” The author concludes by recommending the “use of the Brighton criteria to facilitate the diagnosis of BJHS.” As for treatment, the following methods are suggested: “patient education, activity modification, stretching and strengthening exercises for the affected joint, and osteopathic manipulative treatment.”

In short, an helpful first article to take to your primary care physicam.

The complete abstract and a full copy of this article can be downloaded here

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Abnormalities of the lungs and thoracic cage in the Ehlers-Danlos syndrome (abstract)

March 24, 2009
Abnormalities of the lungs and thoracic cage in the Ehlers-Danlos syndrome by J G Ayres, F M Pope, J F Reidy, and T J Clark (1985)

The study took twenty patients with Ehlers-Danlos syndrome with the goal of assessing “the frequency of respiratory abnormalities in this condition.”   Five patients had “one episode of haemoptysis, but none had any defect of coagulation.”  Recurrent sinusitis was noted “notably in those with the type I syndrome.”  In looking deeper into the lung area “two patients had bullous lung disease, one of whom (type IV) had had three pneumothoraces and subsequent pleurodesis; he also had tracheomegaly (the Mounier-Kuhn abnormality).”  The study then went on to focus on  skeletal abnormalities and found minor ones “such as pectus excavatum…..particularly in patients with type IV disease” while “three patients had the straight back syndrome.”  In focusing on lung volumes, the study noted that there “were no consistent spirometric or lung volume abnormalities, but eight patients had a raised gas transfer coefficient (Kco), possibly due to an increased intrapulmonary vascular volume.  The study did qualify this finding by pointing out that there were two other patients  with “very low values of Kco that were unexplained.”

A full copy of this abstract and the article can be found here

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EDS Alert Newsletter No. 30

March 23, 2009

Please feel free to start promoting the EDS Alert Newsletter where ever you think it might help. Note for readers who use RSS feeds – the link to set up your own feed is here.

This is our quarterly round-up of information about Ehlers-Danlos Syndrome (EDS). For more information about me and this newsletter, please look here for Sources of Medical Info and Support Groups.

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.

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EDS Alert Newsletter No. 29

January 3, 2009

Please feel free to start promoting the EDS Alert Newsletter where ever you think it might help. Note for readers who use RSS feeds – the link to set up your own feed is here.

This is our quarterly round-up of information about Ehlers-Danlos Syndrome (EDS). For more information about me and this newsletter, please look here for Sources of Medical Info and Support Groups.

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.

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EDS Alert Newsletter No. 28

October 14, 2008

Please feel free to start promoting the EDS Alert Newsletter where ever you think it might help. Note for readers who use RSS feeds – the link to set up your own feed is here.

This is our quarterly round-up of information about Ehlers-Danlos Syndrome (EDS). For more information about me and this newsletter, please look here for Sources of Medical Info and Support Groups.

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.

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EDS Alert Newsletter No. 27

August 11, 2008

Please feel free to start promoting the EDS Alert Newsletter where ever you think it might help. Note for readers who use RSS feeds – the link to set up your own feed is here.

This is our quarterly round-up of information about Ehlers-Danlos Syndrome (EDS). For more information about me and this newsletter, please look here for Sources of Medical Info and Support Groups.

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.

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EDS Alert Newsletter No. 26

June 6, 2008

Please feel free to start promoting the EDS Alert Newsletter where ever you think it might help. Note for readers who use RSS feeds – the link to set up your own feed is here.

This is our quarterly round-up of information about Ehlers-Danlos Syndrome (EDS). For more information about me and this newsletter, please look here for Sources of Medical Info and Support Groups.

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.

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EDS Alert Newsletter No. 25

April 24, 2008

The move to a new blogging service has been running smoothly, so please feel free to start promoting the EDS Alert Newsletter where ever you think it might help.  Note for readers who use RSS feeds – the link to set up your own feed is here.

This is our quarterly round-up of information about Ehlers-Danlos Syndrome (EDS). For more information about me and this newsletter, please look here for Sources of Medical Info and Support Groups.

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.

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EDS Alert Newsletter No. 24

March 18, 2008

This is our quarterly round-up of information about Ehlers-Danlos Syndrome (EDS). For more information about me and this newsletter, please look here for Sources of Medical Info and Support Groups.

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.

Posted in eds, ehlers-danlos, hypermobility, newsletter, video | Tagged | Leave a Comment »

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EDS Alert Newsletter No. 23

January 29, 2008

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.

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.

Posted in eds, ehlers-danlos, hypermobility, newsletter | 1 Comment »

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EDS Alert Newsletter No. 22

January 7, 2008

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

Disability/Legal

Forums/Public Discussions

Medical

Misc

News – EDS In The News

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.

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