Posts Tagged ‘ehlers-danlos’

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EDS Alert Newsletter No. 35

November 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 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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Medical: EDS Type 3 vs Hypermobility

November 11, 2009

A new EDS related article was submitted to the American Journal of Medical Genetics.  It argues that the clinical distinctions between Ehlers-Danlos Syndrome Type 3 (Hypermobile) and Benign Joint Hypermobility Syndrome (BJHS) should be put aside in favor of offering more timely and focused treatment to both conditions given the overlapping features/symptoms:

“It is our collective opinion that BJHS/HMS and EDS hypermobility type represent the same phenotypic group of patients that can be differentiated from other HCTDs but not distinguished from each other. Clinically, we serve this population better by uniting the two diagnostic labels. With this approach, we can strive to better define the phenotype and improve measurable outcomes of this patient population. Furthermore, we recognize that it is important that, in those hypermobility patients who develop potentially debilitating symptoms of chronic fatigue or polyarthralgia, whatever the underlying cause, there should be prompt and appropriate intervention [Keer and Grahame, [2003]].”
The article can be read here (with subscription):

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EDS Alert Newsletter No. 34

September 18, 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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Medical: High prevalence of Food Allergies in Patients with Ehlers-Danlos Syndromes

August 6, 2009

“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

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Medical: HORMONAL ASPECTS OF HYPERMOBILITY

August 5, 2009

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

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Medical: Tiny rifts create fragility in collagen

August 5, 2009

“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

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News: Ehlers-Danlos Syndrome On NPR

July 30, 2009

“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

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