You may have noticed that The Ebsteins Society website was offline for a while, due to some unexpected technical difficulties with database sizes.  Software updates as part of this work caused some incompatibility issues which slowed the site restoration, for which we apologise.   Functionality that has been removed or reduced while we continue to improve the site includes:

  • Language translation
  • RSS and ATOM feeds reduced
  • Facebook integration temporarily reduced

Please report any problems you experience to us using the contact form.    Thanks go especially to new society member Trevor Stephens for bringing the original issue to our attention.

 
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. (Margaret Mead)

Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. (Margaret Mead)

Those of you familiar with The Ebsteins Society will have noticed that we’ve updated the website a little.  All the existing content is still there, it’s just that we’ve changed the look of the home page to reflect the development and growth of the society.  The aim of the changes are to:

  • demonstrate the larger society; it now has over 1300 members worldwide
  • encompass the worldwide reach and impact of the society
  • illustrate the ability of the society to achieve more with greater resources

All the content is still there, from useful information on Ebsteins Anomaly, to the discussion forum, news, the online shop, and plenty of ways to help raise funds or donate.

 

BBC Radio Bristol Highlights achievement of  Massimo Caputo and the Ebsteins Society

ES medical adviser Massimo Caputo and Ebsteins Society Supporter Elizabeth Smith talk to BBC Radio Bristol.  Elizabeth underwent a successful repair of her Ebsteins using the pioneering cone technique last year thanks to Dr Da Silva’s visit to the UK.  Tune in to hear Elizabeth talk about her experiences and how the surgery has transformed her life and to hear Massimo talk about how the technique is being disseminated to other surgical centers in the UK.

There will be a live web chat on Atrial Fibrillation on Sunday June 12th 2011 where you can ask questions directly to medical experts in this field.

Reposted from StopAfib.org. See here for details.

The most common irregular heart rhythm disorder is called atrial fibrillation (AF or AFib) and involves the two upper chambers (atria) of the heart. Some people may live for years with atrial fibrillation without any problems; however, it can also lead to heart failure, stroke and even death. Over 2 million Americans are affected by AFib and people with atrial fibrillation are 5 to 7 times more likely to have a stroke than the general population. Take this opportunity to learn more about Atrial Fibrillation, including diagnosis and treatments, and have your questions answered by Dr. Bruce Lindsay, Dr. David Van Wagoner and Dr. A. Marc Gillinov from the Cleveland Clinic and Mellanie True Hills, Founder and CEO of StopAfib.org.

Atrial Fibrillation Live Chat
Monday, June 13, 2011
12 Noon Eastern Time
(11 Central, 10 Mountain, 9 Pacific)

To sign up for this chat, please click on the “Register” button at: http://www.clevelandclinic.org/health/ChatReg/ChatPage.aspx?ChatId=1271

This Health Chat will open on Sunday, June 12, 2011 to allow you to submit questions. We will try to answer as many questions as possible during the chat. Please create an account to attend the chat and submit your questions.

Newsletter

20/03/11

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ebsteins.org - together we'll be better hspace= Happy 2nd Birthday!

It is hard to believe that only 2 years ago Tim and Caroline set up The Ebsteins Society, because look at what we have achieved:

  • 460 members
  • 3000 page visits per month
  • 193 comments and 51 posts
  • Sister site on facebook
  • Raised thousands of pounds
  • Set up a board of experienced trustees
  • We have initiated a process to bring Cone surgery expertise into the UK
  • Pioneering cone technique developer  Dr. da Silva visited from Brazil and performed  operations in Bristol Hospital
  • Set up a shop, and also enabled people to raise money for Ebsteins just by doing their regular shopping on the internet

All this is helping our society to achieve our three aims:

  1. To provide a place for all those affected-by or involved-in Ebsteins Anomaly to share information and exciting developments in research, and learn from the experiences of others.
  2. To raise awareness and provide up to date information about Ebsteins Anomaly.
  3. To raise money to fund research  into Ebsteins Anomaly that will not otherwise be carried out.
da Silva comes to teach the UKDr da Silva brings expertise to UK surgeons

Dr Jose Pedro da Silva is most eminently renowned in Ebsteins circles as he pioneered the cone technique, a way of repairing the tricuspid valve rather than replacing it.  Dr da Silva is based in Brazil and you may remember that last year The Ebsteins Society part funded Bristol surgeon Massima Caputo to go to Brazil and watch Dr da Silva carry out a number of operations.

da Silva comes to teach the UKIn January this year we were delighted to part fund Dr da Silva to come to the UK and assist our Bristol surgeons in carrying out the cone technique on three patients in the Bristol hospital.  This visit was a great success and the surgeons (some outside of Bristol) learned a great deal about this type of repair.  This is the first time that Dr da Silva has carried out a cone repair in the UK and we are very proud to have been instrumental in making this happen.  Tim and Caroline were fortunate enough to meet and talk to Dr da Silva who is highly committed to sharing and disseminating this progressive surgery all around the world.  It is already used extensively in the US, Japan and Germany.

da Silva comes to teach the UKIt is our hope that Dr da Silva will return to the UK again shortly to help surgeons carry out further surgery in Bristol, and therefore develop their skills in performing future operations.  It is our aim to ensure that all UK Ebsteins surgeons will be able to learn this technique so it will be available for all those UK patients who would benefit from this type of surgery.  To do this we need funds, and so if you can help raise money in any way, no matter how small, then please do get involved.

da Silva comes to teach the UKWe are very proud of our achievements after two years, but there is so much more to do.  We need to raise awareness of Ebsteins in the media so please share your story with us, and we need to facilitate a form of training and dissemination programmes for U.K. surgeons so that we can offer interventions which are comparable with countries such as the U.S. and Germany.  In addition, we would also love to fund a study to establish how many people are affected by Ebsteins and how this affects their quality of life.

To fulfil all these aims we need you to help us – Ebsteins is a rare disease so the number of people who could be involved is relatively small so you are very important.  As a member of our society you know that even though Ebsteins is rare it can have a significant impact on lives.  Please help us to help those affected by getting involved, fund raising or sharing your experiences.

Ebsteins Society shop now openIt’s true – Shopping is good for us!

You can help the ebsteins society by visiting our shop and buying bracelets or t shirts, and why not sell a few to your friends – every little helps in the work we are trying to do.

Alternatively, if you use this gateway before shopping on the internet it won’t cost you a single penny more but there are 250 providers such as Amazon and Expedia who will donate commission to our society.  Forward this link to your friends so whenever they do any internet shopping they can raise money for the Ebstein’s Society.  It’s hard to believe there is no catch but there isn’t and there couldn’t be an easier way of raising money!

We have some really great wrist bands, and fair trade organic tee shirts for sale in our shop, or if you think you can sell a few of these to raise funds on behalf of the Ebsteins Society then please contact us.

Help ebsteins.orgThe site has clearly been an important place to many people….whether to find information on Ebsteins Anomaly, to learn from others, or to share thoughts and feelings. However, in addition to this we want to tackle the condition head-on, and that takes funding. We’ve already helped train a UK surgeon, and we want to do this again, and much more besides….. please help by getting involved. We can’t do it without you.
Recent posts
Review concludes
The long awaited review of hospitals performing pediatric heart surgery in the UK is published today, 16th February.  The review,  initiated by Sir Bruce Keogh,  analyses the number of cardiology centres of excellence in the UK to ensure a balance between the number of hospital performing heart surgery and the expertise within them.  Part of […]
Raise awareness of Ebsteins Anomaly
Would you be willing to share you story?  The Ebstein’s Society is looking for volunteers who would be willing to share their experiences through the media. The Ebsteins Society is preparing a press release for the general media as part of our ongoing work to promote improved diagnosis, knowledge  and intervention.  Many of the society’s […]
4 month old with Ebsteins “Hates” tummy time
Is this normal with Ebstein’s that babies hate tummy time? He cries the whole time he is on his tummy. I only can deal with him crying for just a few minutes. I would love to know if anyone has had this experience. Does it hurt their chest? Is it too much “work” for them? […]
Ebstein’s and pacemakers
My mother has Ebsteins and WPW and her doctors have decided to put in a pacemaker. Has anyone else had this procedure done to help with ebstein symtoms?  She is only 52 and on all the sites I’ve read, they say pacemakers are rarely used in ebstein patients.
Hereditary?
Hi everyone I have just been diagnosed with ebstein anomaly.  Can anyone tell me whether it is hereditary? Thanks glenyese
Thoughts, Comments?
One of the great successes of our site has been the comments and posts that you have written – some of the stories have been very moving.  Please revisit the site to see how the topics have developed – and even better let us know about your own experiences.  Many people have commented about how helpful the site has been for them, and we are only helpful because of what you write; please login and write a post.

Thank you for your ongoing support!

 

We’re pleased that The Ebsteins Society is two years old and we’re going from strength to strength!

Ebsteins.org is 2 years old

Happy 2nd Birthday The Ebsteins Society

Just two years ago, Caroline and Tim launched www.ebsteins.org to the world and since then we’ve grown to a fully fledged charity and arguably the leading source of information and support for those affected by Ebsteins Anomaly.  We’ve had a huge impact due to your support, postings, comments, and help.  Here are some of our acheivements so far:

  • Coordination and part-funding of bringing expertise on the cone technique to the UK
  • Better understanding of the cone technique to several UK heart surgeons
  • Raising of thousands of pounds to enable our work
  • Worldwide, multi-lingual support forum sharing experiences
  • Over 2,500 page hits per month and rising
  • 306 members

Review concludes

16/02/11

Heart Surgery Monitoring

Heart centres under threat

The long awaited review of hospitals performing pediatric heart surgery in the UK is published today, 16th February.  The review,  initiated by Sir Bruce Keogh,  analyses the number of cardiology centres of excellence in the UK to ensure a balance between the number of hospital performing heart surgery and the expertise within them.  Part of the “Safe and Sustainable” policy, the review intends to have fewer but better “centres of excellence” performing  child heart surgery, although parent concern is that they may need to travel further for their childs treatment.

The report, produced by a team led by Sir Ian Kennedy, goes to a steering committee of primary care trusts, before a wider public consultation.  It’s expected to conclude that 4 of the 11 UK centres should close;  likely to be Leicester, Leeds, Oxford and the Brompton Hospital in London.

More details can be found on the BBC news website.

Would you be willing to share you story?  The Ebstein’s Society is looking for volunteers who would be willing to share their experiences through the media.

The Ebsteins Society is preparing a press release for the general media as part of our ongoing work to promote improved diagnosis, knowledge  and intervention.  Many of the society’s members have shared their experiences on the website and this has provided a huge level of support for others with the condition.  It has also helped share information and promote awareness.  Now we’d like to take your message out to the wider world.  Perhaps you’ve had a replacement valve, or you’re awaiting surgical intervention, or you’ve choosen to live with the condition.  Whatever your story, we’d like to hear from you.

Please contact us if you’re interested.

Why not help The Ebsteins Society each time you shop online?   Now you can – each time you do your online shopping via the http://www.buy.at/ebsteins, the society will benefit from a free commission paid by the online retailer!  The commission quickly add up, so we really encourage each of you to start your online purchases at  http://www.buy.at/ebsteins.  It won’t cost you a penny extra, and each commission (which can be as much as 8%) will go directly to helping The Ebsteins Society.

Jayne Spink, one of our trustees, has recently set up an account using the buy.at shopping portal as part of her work supporting fundraising for the society.  The portal offers commissions from loads of the big-name online suppliers such as M&S, Amazon, Littlewoods, Asda, play.com and many others.

Start your Christmas shopping now……http://www.buy.at/ebsteins

Thanks to all those who were involved in our pram push in the park.  We raised over £1300 which was great!

See http://www.thisisbath.co.uk/news/Mum-bids-raise-funding-training/article-2415655-detail/article.html for the write up.

3 legged race

14/06/10

In coordination with the Katy Turner pram push fundraiser, we’re running a three-legged race around the same course in Bath’s Victoria Park.  Here’s a fantastic chance to get your kids involved in the fundraising – they can ask their friends to sponsor them and take part in their own fun activity.

If you can get along to the event on 11th July then please come and support us.  If not, why not organise your own event instead!

 

Fundraising for Ebsteins AnomalySummer’s here and it’s time to take advantage of the weather to raise some funds.  This is exactly what one of our members, Katy Turner, is doing in her local city of Bath.

Katy’s daughter Emmeline is three and was diagnosed with Ebsteins at birth. Since then Katy and her husband Ed have joined the Ebsteins Society and are now organising our first summer fundraising event in 2010 – a sponsored pram push in Victoria Park in Bath.

We would love you to support this event either by coming along or sponsoring Katy (click for details), or perhaps you could organise you own event! – see our fundraising page for ideas.  Of course, we always welcome direct donations to The Ebsteins Society!

It is one year since the launch of our website, and time to recap on what we have achieved – and what we would like to achieve in the future.  Here is what we have done:

ebsteins.org helps train heart surgeon in new ebsteins technique

Massimo with Dr da Silva and Dr Luciana Da Fonseca and their son

In June 2009 we held a fundraising barn dance and charity auction in Bradford-on-Avon, Wiltshire and raised a total of £2, 100.  With this money we part funded Massimo Caputo (heart surgeon at the Bristol Children’s Hospital) to go to Brazil and spend 5 days with Dr Da Silva, the eminent cardiologist who pioneered the ‘cone surgery’ techniques.  During the 5 days Massimo watched 5 different Ebstein’s operations, all very different and he looks forward to putting these into practice in the UK.  At present, to our knowledge no other UK hospital currently offers the cone technique as a method of repair, although the short term and mid terms results of this have been very successful, see this research paper or have a look at the Illustrations of Da Silvas cone technique.

Jose Pedro da Silva

Read more about here.  

Importing techniques such as these to the UK is extremely important, so that those with Ebstein’s can be offered a range of choices and options.  Whilst the U.S. commonly employs the cone repair, it is not offered to those in the UK.  Smaller numbers of people with Ebstein’s (smaller population) and a large number of UK hospitals dealing with this condition inevitably means that surgical expertise and experience is relatively low compared with the US.

Learning the cone technique

We wish to build on this important step, disseminating the technique to others, and continuing to develop the skills of surgeons such as Massimo.

You can help us achieve this by getting involved with ebsteins.org.

Fantastic first year achievements

In the first 12 months of our website launch we have recruited 167 members, had over 20,000 page views and have climbed from 18th to 3rd in the google search for Ebsteins.  Not bad, considering that Ebstein’s Anomaly is such a rare condition.  There have been some really touching comments since we started, and it seems the site has been a great support for some of you.  Please revisit the various blog areas to engage with the conversations on different subjects, and if possible load up a photo (avatar) of yourself so that other members of the community can see what you look like!

Keep the support going

Research into the conditions of Ebstein’s is notoriously underfunded, as it affects such a small segment of the population.  However, to those affected by Ebstein’s, understanding more about the condition it is crucial, for example is it genetic/ hereditary?  We need help to fund an epidemiological study in conjunction with Bristol children’s hospital.  Our target is to raise £40, 000 to pay for a clinical researcher for 12 months to establish the size and nature of the problem of Ebstein’s in the UK.  We have already had offers of help to do some fund raising, can you help?

ebsteins.org helps train heart surgeon in new Ebsteins technique

Learning the Cone Technique

Ebsteins.org has part funded leading Ebstein’s Anomaly heart surgeon Massimo Caputo to go to Brazil and spend 5 days with Dr Da Silva, the eminent cardiologist who pioneered the ‘cone surgery’ techniques (see here for Illustrations of Da Silvas cone technique).  During the 5 days Massimo watched 5 different Ebstein’s operations, all very different and he looks forward to putting these into practice in the UK.

See more about .

BCH under threat?

According to an article in The Daily Telegraph up to half of the country’s specialist heart surgery units for children face closure under controversial Government plans.  The plans follow recommendations about new safety standards, effectively having fewer hospitals but with a greater concentration of expertise.

Add a comment to tell us your view.

We’ve taken on board some of the helpful comments made about ebsteins.org by reworking the Discussion forum.

This useful forum for sharing knowledge and experiences has proved more popular than first imagined and time has shown us which areas were particularly important to you.   The time had come to change the structure of the categories, as well as adding some new categories and removing some old ones.  We hope the new structure is clearer, easier to use, and will encourage even more dialogue.

Please register as a member to submit posts to the Discussion forum on subjects that interest you.  Non-members can only submit comments.

The MiCardia Corporation of Irvine, California has announced the completion of the first U.S. implant of its Dynaplasty mitral valve repair technology.

MiCardia is developing Dynaplasty® technology for the treatment of structural heart disease, focusing initially on mitral and tricuspid valve disorders and as a method of interrupting a major element in the onset and progression of Heart Failure.

The full new item can be found here.

Poet Rebecca Goss talks on the BBC’s Womans Hour about the death of her daughter Ella at the age of 16 months from Ebstein’s Anomaly.  You can read more about Rebecca’s appearance on Womans hour on the BBC website, where you can also listen again to the broadcast itself.

We’re pleased to announce that our first fund-raising event on 6th June 2009  “The Big Charity Barn Dance” raised just over £1600 !

The event was a lot of fun and enjoyed by all, and we hope to make this an annual event.  The funds from the barn dance will be used to send a surgeon and a cardiologist from Bristol Children’s hospital overseas to learn how to perform the surgical intervention called the ‘cone technique’, which currently is not available in most UK hospitals.

This is the first of many fund raising events, but we need you all to get invoved and do your own fund raising too.  We now need to raise some funds to do a studywhich will show exactly how many people in the UK have been  diagnosed with Ebstein’s, and which will start to look at some of the complex factors around these cases, so we can learn more about the condition.

£1600 is a great start, but please get involved and help with your own fundraising ideas. to help us raise more.  Alternatively, you can always contribute on our donations page.

We’ve today added a useful paper on the results of surgical intervention on 539 Ebstein’s Anomaly patients to our surgical intervention research page.

Before certain dental procedures those with heart problems used to be advised to take anti-biotics to prevent infective endocarditis, a potentially fatal infection.
Recently, the guidleines have changed.  It is important for you to be aware of this debate so you can make up your own mind as to whether you might want to continue to request anti-biotics.
Please see this link and this link for discussions on the subject.

This new website will be a fantastic resource to all those affected-by or involved-in the heart condition known as Ebstein’s Anomaly.  The site will provides a means to share information, discuss how to deal with the condition, provide the latest research news, and give links to experts around the world.

A collaborative effort between concerned parents and medical practitioners, the site has the valued support of Mr Massimo Caputo MD, Mch Consultant in Paediatric and Adult Congenital Surgery and Dr Andrew Tometzki MB ChB, MRCP, FRCP Consultant in Fetal & Peadiatric Cardiology both of Bristol Children’s Hospital.

News from other related sites

hot off the press!


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