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

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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!

 

For all the people that have had open heart surgery for their Ebstein Anomaly… Were you a sick child?  Did you have alot of problems?  What made them do open heart surgery on you … I am just asking because I want to know what to look for in my son… I want to know all details of things so I know if I gotta get him in and be seen or if he is just normal… What are signs of things that I should watch and look for in my son? Please anyone who reads this please help me understand things that I need to know and watch for .. Oh yeah and I seen some post about the tummy time… My son also does not like tummy time at all .. So I do other things with him to help him learn he is 4months old and he can hold his head up he can sit on his own and when he is on his tummy he gets really mad and he pushes himself backwards … he loves to play when he is awake he is full of energy but he wears down really fast… but I heard that it is normal for him to be more tired then normal babies his age… Thanks for all the help and support…