EDS Alert Newsletter

EDS Alert Newsletter No. 34

edsalert — Sat, 19 Sep 2009 03:52:10 +0000

• Videos
• Video: Bad Glue: Ehlers Danlos Syndrome On Mystery Diagnosis – Full Episode
• Video: EDS Aorta – Video Clip from ABC in Toledo, OH
• Video: Postural Tachycardia Syndrome Documentary
• Video: YouTube – Don’t Presume

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 newsletter

Medical: High prevalence of Food Allergies in Patients with Ehlers-Danlos Syndromes

edsalert — Thu, 06 Aug 2009 18:28:31 +0000

“Collagen abnormalities may cause mucosal lesions, altering tissue integrity and increasing the chance of larger proteins crossing the mucosal barrier and creating an immunogenic response.”

More here

Posted in newsletter

Medical: HORMONAL ASPECTS OF HYPERMOBILITY

edsalert — Thu, 06 Aug 2009 06:53:21 +0000

Dr. Bird, a leading expert on hypermobility has written about the ‘Hormonal Aspects of Hypermobility.” As always, we will only be quoting excerpts from this article, even though it is now available online (see link below)

“Although oestrogen tends to stabilise collagen, progestogens loosen it. Many hypermobile patients, though not all, noticed a worsening in symptoms, more pain in the joints, clumsiness or a greater tendency to dislocate in the five days leading up to menstruation and in the few days after menstruation. This is exactly the time when the progesterone compounds far exceed the stabilising oestrogen compounds…. ”

Women who have increased pain during menstruation usually notice this after their period has become irregular which means that the estrogen/progesterone ratio may be off.

His suggestion?

Avoid progesterone only pills or “progesterone depo contraception preparations or … mechanical devices impregnated with progesterone.“ But he also points out that this is not a one size fits all answer. Some women cannot take estrogen contraceptives, in which case he suggests trying a different kind of progesterone. More importantly, you need to discuss the pluses and minuses of your contraceptive choices with your doctor. Handing your doctor a copy of Dr Bird’s article would be a good start. If you live in the UK, the article is part of the Hypermobility Leaflet Pack.

And what about post-menopause when estrogen vanishes and the potential for pain increases? Will hormone therapy help in spite of the risks? “Since the oestrogen amount [during HRT] is very small…..[it] is often not enough to provide a protective effect for the joints.”

more here

Posted in newsletter

Medical: Tiny rifts create fragility in collagen

edsalert — Wed, 05 Aug 2009 19:57:45 +0000

“Researchers at the Massachusetts Institute of Technology (MIT) have for the first time carried out a multi-scale analysis to shed light on how bone’s material flaws lead to brittle bone disease.

The researchers say that the weak tendons and fragile bones characteristic of osteogenesis imperfecta, or brittle bone disease, stem from a genetic mutation that causes the incorrect substitution of a single amino acid in the chain of thousands of amino acids making up a collagen molecule, the basic building block of bone and tendon.

They add that that minuscule encoding error creates a defective collagen molecule that, at the site of the amino acid substitution, repels rather than attracts the collagen molecule alongside it.

According to them, this creates a tiny rift in the tissue, which when repeated in many molecules, leads to brittle tissue, broken bones, deformity and, in the most severe form of the disease, death. For example, if healthy collagen tissue looked like a sheet of paper, diseased collagen tissue would look more like a sheet of paper full of tiny perforations. At each of these perforations, the sheet would be considerably more prone to tearing. “

more here

Posted in newsletter

News: Ehlers-Danlos Syndrome On NPR

edsalert — Fri, 31 Jul 2009 00:24:38 +0000

“President Obama is on the road, promoting health care reform before Congress goes on August recess. That issue is of utmost importance to Barbara Calder. She’s been unable to qualify for health insurance since she was diagnosed with Ehlers-Danlos Syndrome, a rare genetic disease. Now, Barbara is hoping to sell her home in Colorado and move her family abroad. As she tells Dick Gordon, having the disease has changed her view of health care in the U.S. As a dual citizen, she thinks she’ll be able to get better care in Belgium.” The Story on NPR here.

Listen to it here

Posted in newsletter

EDS Alert Newsletter No. 33

edsalert — Sat, 25 Jul 2009 23:36:56 +0000

• Forum Posts
• Forum: Confused newbie needs help w/ treatment options(-)
• Forum: Exercise(-)
• Forum: Facebook | Ideas?-Adjusting to Life with EDS?(-)
• Forum: Facebook | Losing weight and EDS.(-)
• Forum: Facebook | Myopia
• Forum: Facebook | Over 40 and living with EDS
• Forum: Hip surgery, anyone?(-)
• Forum: Over 40 and living with EDS
• Forum: Pain Unmangment(-)
• Forum:Gastroparesis – Dysautonomia (Autonomic Dysfunction)

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.

Posted in newsletter

News: Swiss Doctor Speculates Michael Jackson May Have Suffered From Ehlers-Danlos

edsalert — Fri, 17 Jul 2009 22:02:03 +0000

This article is pure speculation and is written in French. Translated version is here. Original article is here.

Edited to add: see comment from the author of this article below.

Posted in newsletter

EDS Alert Newsletter No. 32

edsalert — Sun, 14 Jun 2009 16:53:30 +0000

• Forum Posts
• Forum: EDS and body weight(-)
• Forum: EDS and POTS | Facebook
• Forum: EDS Dr in MD or VA(-)
• Forum: Excruciating Hip Pain(-)
• Forum: Gastroparesis from dopamine RI vs agonist?
• Forum: Hip and lower back pain! | Facebook
• Forum: INTENSE ABDOMINAL PAIN | Facebook
• Forum: Newly diagnosed nurse… may need to change jobs. Need advice.(-)
• Forum: PatientsLikeMe : Patients Helping Patients Live Better Every Day

• Medical Articles
• Medical: Hypermobility increases risk of osteoporosis | The Philippine Star
• Medical: Menstrual cycle affects knee joints
• Medical: Scalp Laxity Paradox – Scar Size After Hair Transplants
• Medical: Some Pain Medications May Interact With Anti-Depressants

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.

Posted in medical, newsletter, video

EDS Alert Newsletter No. 31

edsalert — Mon, 11 May 2009 21:55:32 +0000

Forum Posts
• Forum: – gastroparesis (yeah it’s me again)
• Forum: Benign Hypermobility Syndrome vs EDS?
• Forum: I need advice with talking to my doctor | Facebook(-)
• Forum: List of EDS books and literature
• Forum:Facebook | Anti-depressants for Pain Management
• Forum:| Worsening Pain- Can it be reversed?

Video
• Video: EDS Questions(-)
• Video: Ehlers-Danlos Syndrome – CMC Splints(-)
• Video: Ehlers-Danlos syndrome: Take Your Time(-)
• Video: Life Before Diagnosis(-)
• Video: Proof of EDS?(-)
• Video: Revisiting EDS and FMS(-)
• Video: Show and Tell with Bracing!!(-)

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.

Posted in eds, ehlers-danlos, hypermobility

Medical: Some Pain Medications May Interact With Anti-Depressants

edsalert — Sat, 18 Apr 2009 05:08:19 +0000

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.

Posted in medical

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

edsalert — Sun, 05 Apr 2009 18:15:29 +0000

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.

Posted in medical

Medical: So You Think You Have EDS?

edsalert — Sat, 04 Apr 2009 19:45:38 +0000

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.

Posted in medical

Medical: Pain Medications and Motility? In My Stomach?

edsalert — Tue, 31 Mar 2009 21:44:15 +0000

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”

Posted in medical

Forum: Benign Hypermobility Syndrome vs EDS?

edsalert — Sun, 29 Mar 2009 20:46:36 +0000

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

Posted in medical

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

edsalert — Wed, 25 Mar 2009 06:54:37 +0000

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)

Posted in medical

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

edsalert — Tue, 24 Mar 2009 17:05:07 +0000

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

Posted in medical

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

edsalert — Tue, 24 Mar 2009 16:05:05 +0000

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

Posted in medical

EDS Alert Newsletter No. 30

edsalert — Tue, 24 Mar 2009 05:16:41 +0000

• Forum Posts
• Forum: eds and tattoos
• Forum: I haven’t this since 2006, I think?
• Forum: Marijuana(-)
• Forum: Photo Diary(-)
• Forum: Received geneticist’s report, am I reading this right?(-)
• Forum: What’s so Benign about BJHS?(-)
• Froum: Driving Difficulties

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.

Posted in newsletter

Welcome To The EDS Alert Newsletter

edsalert — Thu, 08 Jan 2009 07:34:08 +0000

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.

Posted in eds, newsletter, welcome

EDS Alert Newsletter No. 29

edsalert — Sun, 04 Jan 2009 02:39:30 +0000

• Blogs/Online Diaries
• Blog: Off to the specialist clinic
• Blog: One Sick Mother: Book Larnin’(-) EDS & Physical Therapy
• Blog: Our Staffing is Coming Up…
• Blog: Pain
• Blog: Pain Management
• Blog: Preventing injuries and protecting your skin and joints
• Blog: Sneeze
• Blog: Time Buys Credence
• Blog: To Cure The Incurable?
• Blog: Upright
• Blog: We found a great PA at the Peds Clinic
• Blog: Well, that sucked.
• Blog: Wish upon a star~ (something mostly just for fun) ~ with a serious side as well.
• Blog: You have a problem with your connective tissue.

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.

Posted in newsletter