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

Young Adult

27/12/10

Our son Marc was diagnosed  with EA at the age of 2, when our GP noticed an unusual heart beat. He was put on medication and monitored twice a year until he was 16 and then once a year as he had no changes or symptons. Because he was a large child and grew to be a 6’5″ adult and had an enlarged aorta, he was also monitored in case he had marfaans, for which he had no other classic symptoms. At 16 he developed narcolepsy/cataplexy and was given another drug to keep him awake. Long term these may have conflicted. He started at the local University and partly moved out into a shared student house, dropping home as and when he felt the need! I know he wasn’t taking his heart medication every day, but did take his narcolepsy drug to keep him awake in lectures, and he took full part in University life – partying and rushing about at high speed and holding down a weekend job. He didn’t take recreational drugs as he was well aware of the dangers with his two medical conditions. He was living life to the full. The week he collapsed and died, he had been VERY stressed about a number of issues. He had a quiet evening out, came in with his girlfriend sat in the chair and passed out and his breathing became very irregular. We called an ambulance and I did CPR until they arrived and took over. At the hospital they worked on him for some time, to no avail. We didn’t have a post mortem because all the medical staff were convinced that his aorta had split (a marfaans outcome) His heart consultant on reading all the reports from the night thinks that it was more likely connected to the Ebstiens and was a massive heart arrythmia . We have since discovered that he often had mid chest pains and irregular heart beats and had fainted on more than one occasion, but had ignored them as they passed quite quickly.

He was 21 years old, and our only child. He was very bright.

When your child leaves home and has to take responsibility for their own health and medication, it is a huge risk. They know it all and don’t want you nagging them. They only tell you what they want you to know. Maybe it would have helped if he had still been monitored twice a year still, something may have been picked up.

My Felisha

27/12/10

My daughter Felisha was born in 1997 in Asheville, NC with moderate/severe EA. She ran and played like all the other kids but just tired a little sooner but she rested a little then went again. At age 5 Dr. Tripp at Asheville Cardialogy and Dr. Darani at the Mayo Clinic decided it was time to fix her valve so we got on the road to MN. She had her valve replaced with a pig valve and she has been doing great ever since. She now is 13 and the valve is leaking a little as expected, Dr. Darani said maybe it would last for 6 or 7 years. Darani and the guys at Mayo are alsome, and if anyone out there is trying to decide were to go for surgery, there is no better place to go in my opinion.

HELP

27/12/10

We were just diagnosed yesterday. My daughter in law is approx 22 weeks with our first grandchild.  she has an appointment with a cardiologist  on Friday.  so many questions?????  I’ve been on the internet non stop  and this site is the only one I can  understand.  Our grand daughter not only has  ebstiens anomaly there is a possible club foot, extra fluid on the brain and the doctor wants to check chromosomes.  Are these other symptoms or abnormalities apart of ebstiens anomaly? What questions should we ask the cardiologist?

I am looking for some advice as feel very unsure what the future holds! Georgina is 3yrs and was diagnosed in Feb after many trips to hospital. She has been a very sick child and is now under the care of Great Ormond Street. she is seen every 8weeks and things have started to worsen! she has now developed an irregular heart beat. She has been put on medication but I can’t get her to take it (even tried hiding in food). She is very anxious about hospitals and I’am finding it a real battle to do the best for her. Her consultant has said he wants her to take the medication to buy us time before they do the valve repair but he is now worried her heart may be tiring as she has prollonged episods of fast heart rate which they are trying to controll
I was just looking for some who has experienced any of the above and can offer me some help.
Alex x

Hereditary?

27/12/10

Hi everyone

I have just been diagnosed with ebstein anomaly.  Can anyone tell me whether it is hereditary?

Thanks glenyese