Posts Tagged ‘hypermobility’

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San Francisco Ehlers-Danlos Syndrome Meet-Up @ Taking Charge of Pain

April 21, 2010
SF Ehlers-Danlos Syndrome Meet-Up @ Taking Charge of Pain
Date: Sunday, May 16, 2010
Time: 11:30am – 2:00pm
Location: San Francisco County Fair Building (Hall of Flowers) – Located in Golden Gate Park at the intersection of 9th Avenue and Lincoln Way
Street: 1199 9th Avenue
City/Town: San Francisco, CA
Please join others with Ehlers-Danlos Syndrome at this learning event focused on pain. Meet others with EDS and learn about some pain management options.

Taking Charge of Pain is a national, grassroots public awareness, community education and patient mobilization program developed by the Global Healthy Living Foundation.

The program will provide a better understanding of pain, treatments available for pain, and options and rights when seeking care.

Time: Lunch is served at 11:30AM. The event runs from Noon-2:00PM

RSVP Requested: To Register, please call (415) 932-0949 or submit the form at the bottom of

http://www.ghlf.org/takingchargeofpain/registration_sanfrancisco.php.

An Ehlers-Danlos Syndrome information table will be set up with materials and your-fellow EDSers to provide EDS Awareness and networking opportunities.

Event Agenda:
• 11:30-12:00 Networking with ally organizations (Including an EDS Awareness Table)
• 12:00-12:10 Welcome to Taking Charge of Pain – Seth Ginsberg
• 12:10-12:40 “What Is Pain and What Can You Do About It?” – Dr. Jeff Gudin
• 12:40-1:05 “Getting Past the Barriers to Effective Treatment” – Lisa Norris
• 1:05-1:30 “Complementary/Alternative Treatments for Pain Management” – Dr. Akilesh Palanisamy
• 1:30-1:50 “Getting Proper Treatment Depends On You” – Laurie J. Ferguson, PhD
• 1:50-2:00 “How Do You Feel?” – Seth Ginsberg

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EDS Alert Newsletter No. 36

April 5, 2010

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. You can also subscribe by email by clicking 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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News: UK EDS Conference (May 2010)

April 4, 2010

EDSG National Conference

Date: Saturday 1 May 2010
Time 10.15am to 5pm
Venue: Holiday Inn Leicester City, 129 St Nicholas Circle, Leicester, LE1 5LX
Cost: Adults £32, Children 10-16 £16, and Children under 10 Free

On Saturday May 1st 2010 the EDS support group will be putting on a conference that is not to be missed. We will have some incredible speakers coming to give information on a variety of problems that are associated with our condition. As well as meeting such valuable members of the medical community, it will also give you a chance to meet fellow EDS sufferers, something that is so helpful living in a world with so few of us diagnosed.

The Leicestershire Suite at Holiday Inn Leicester City has been booked for the Conference this year. This venue is the same as the 2008 Conference and is fully DDA compliant, has a large Conference Room and a PA System, while still in a central location with good road and rail links.
The cost for the Conference includes tea/coffee/orange juice with biscuits on arrival, a three course lunch and afternoon tea/coffee. Car parking is £5 for 24 hours.

National Car Parks have promised to cone off a number of spaces on the ground floor of the car park opposite the Hotel. When you arrive at the car park take one of the tickets on entering as normal. NCP will be sending some tickets which will tell the exiting machine that the price is £5. The relevant number of tickets will be sent to me and included in the wallet you will receive on Registration. When leaving the car park insert the ticket you took on entering the car park and then insert the ticket from the Registration wallet. This should then display the correct amount of £5 to be paid. This arrangement only allows for one entry and exit from the car park. If you leave for any reason in between then payment will revert the normal charge. If you stay longer than 24 hours your exit ticket from the wallet should still be inserted in the machine and the necessary adjustment will be made.

The planned programme includes presentations on the subjects of: Living with Disability, Podiatry Problems, Paediatric Gastro-Intestinal Issues – Parent/Doctor and Patient/Doctor Relationships, Paediatric Gastro-Intestinal Surgery, and Respiratory Problems in EDS.

In addition

+ a selection of EDS literature will be available plus Beanie Bears and EDS badges
+ a raffle will be held in the afternoon with tickets available through the day.
+ a number of members make cards and gifts for Support Group funds; please feel you can bring anything you have made.

The Conference aims to provide an opportunity for members to meet together, share ideas and support each other in addition to learning more about EDS. If you would like to come to the Conference, please let me know ASAP and I shall send you a booking form to complete and return ASAP. We have to give final numbers to the Hotel four weeks before the date of the Conference. We would hope to be able to accommodate everyone who would like to come but spaces may need to be allocated on a first come basis.

The Conference is a one-day event and accommodation is not included. Accommodation can be booked at the Holiday Inn Leicester City, Tel 0871 9429048 (room reservation from the options) at a special rate of £75 per room for Bed and Breakfast, please quote group code UUR. Booking is open now. Please note that the Leicester Holiday Inn Reservation Desk is open Monday to Friday between 8.30am and 6pm but unfortunately is closed at the weekend, and if you try to book during the weekend, your call will be diverted to the Central Reservation Office. Unfortunately, they will not have details of the terms we are being given or the group booking code.

Alternative accommodation can be booked through the Leicester Tourist Information Office, Tel 0906 2941113 or E-Mail info@goleicestershire.com or post 7/9 Every Street, Town Hall Square, Leicester LE1 6AG.

PLEASE CONTACT THE DETAILS BELOW FOR MORE INFORMATION RATHER THAN LEAVING MESSAGES HERE.

Many Thanks, and I look forward to seeing you on the 1st,

Lara Bloom
Tel – 07563 573454
Email -lara@ehlers-danlos.org
http://www.ehlers-danlos.org

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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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