General Chat

As you know my son was diagnosed with the strain of
SADS called Brugada syndrome. Apparently, up intil ten years ago this condition had no name. So when Morris was born, nobody knew about it. There are no known medications available that can stop this silent killer, but by having a defibrillator fitted, this can prevent death. Most interestingly is that in Asia it is the most common killer of young people after car accidents, that is frightening.

Hello Gillian

l am interested, this really is frightening. l wonder why this is the most common cause of death for the young??
Don't suppose Morris has heard when he has the defibrillator fitted?
You are doing a wonderful job at keeping us all informed and updated, keep it up!!

Take care
jude xx

No Jude, no news yet, they are wanting to do another test, but we cannot see the need to put his heart through more trauma, so he is going to get an appointment with the heart specialist dealing with genetic disorders, soon I hope, but problem with work, he may not be allowed to work alone, and that is part of his job, something to do with insurance, here we go with problems, but I am sure they cannot discriminate him for this!!

The latest news is, all who have been fitted with a defribulator (spelling) are doing well, so there is hope XX..

It really is an unknown killer and all children should be getting tested for the silent killer.


Too many young people dying of this.
I was told by a friend on Tuesday of last week that her friends daughter who was just 24 and had a baby 6 months old had died of this disease.

Sue

12 a week, at the moment die from this silent killer, that is 50% rise in the last three years, Morris has it, and what of my other children, its frighteningXX..

I hear about more and more each day, and to think it strikes in seconds.

Hello Gillian....sorry l went to bed after my last post.
l do hope they test all your family soon.......and poor Morris l can understand you not wanting him to have more tests, he needs the defibrulater NOW. Its brilliant that others with it are ok:o), this proves the need for others to have it and for more tests to be done!!
Yes l remember only a couple of years ago it was 8 die every week.

take care

jude xx

The paragraph below is from the SAD's newsletter. anyone else that has this condition in their families might want to keep an eye on the SAD's website to see where the next place will be, you may not get a test but you can ask questions as to how too!!
.......................................................................................................................................
CRY Philips Test My Heart Tour 09 - First free heart testing tour of England

A new national campaign aiming to reduce the number of undiagnosed heart conditions kicked off in Durham on the 2nd May. The CRY Philips Test My Heart Tour 09 is the first free tour of its kind in England and aims to test the hearts of 3000 young people aged 14 - 35.


jude x

Thank you for that input. Yes, since Stephen died the total per week has risen by 50% that is rising at an alrming rate. And if you consider, in my family alone, we have discovered 4 members who have proved positive. My Son Morris, my nephew Simon and two of Simon's children, that is very frightening.

Jude, I sent for the info from CRY as they aren't planning to visit our neck of the woods unfortunately, but I must get round to reading it all. I want my son to ask our doctor to check him over, just in case he can detect any problems that need further investigation, that might save me the heartache Gillian has had and mean my son can out live me. He seems very fit and healthy but if he can be checked so much the better.

Thanks Gillian for letting us all know about this silent killer.

Lizxx