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.

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? His Ebstein’s isn’t severe but significant the cardiologist say. Anyone have any answers or any thoughts on this please email me or post on here! tommygirl_26201 [at] yahoo [dot] com

Thanks Melissa Ferrell

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.