General Chat

Two years on from publication NHS Chapter 8 strategy on Arrhythmias and Sudden Cardiac Death, leading charity CRY has committed to fund coroner referrals to an expert cardiac pathologist when a young person dies suddenly and the cause is unknown. This offer of expert help to coroners provides an essential service for affected families. It will ensure they receive a cause of death, but also enable identification of other family members ar risk of having a similar genetic condition. This will build on the three year grant of £180.000 from CRY received by expert cardiac pathologist Dr. Mary Sheppard in 2006 to establish a research center at the Brompton Hospital, specialising in young sudden cardiac death (YSCD) Without expert pathology, families suffer the agony of not receiving answers to the cause of their tragedy and remain unaware of ther genetic implications. When inquests are opened there can be interminable delays as coroners try to find the cause of death. This project will end this unnecessary distresss and bring closure for the family allowing them to focus on the first difficult steps of the reconstruction of their lives after their loss. En axtract from the report released 1st March, 2006. My Stephen died 18th March-may be if CRY had not funded this,maybe his death would have been put down to heart failure and I would never have known to get the rest of my children tested. So I say Thank you CRY-for your donations to enable me to know why my Son died-even if I still find it difficult to comprehend. That is why I have opened Stephens memorial fund page, to help CRY continue to help us. If you want to help please email me-Thank you for taking the time to read this-it could effect you tomorrow. God forbid.

Jennifer I am glad this gives you a little comfort, but oh, what a pathetic amount - £60,000 per year will hardly pay for two full time researchers. But if it helps just one family, then it is money well spent. I hope the project goes from strength to strength. OC

The biggest shock I got was the lack of knowledge by GP's. I have to take a list with me, as do my children, showing the doctors what medication we have to avoid, as certain drugs can trigger this off. Frightening. I dare not let my children take a simple cold remedy without first checking this long list.

n

Please read and spread the word. SADS Sudden Adult Death Syndrome and CRY Cardian Risk in the Young. My Son was fine one moment gone from us the next-cannot begin to explain how this leaves us - his family - please learn about this affliction and spread the word - Stephens page-email me for details-Please - YOU can make a difference.

A friend lost her son to this several years ago, he had just played a football match.

nudge xxx

There are far two many youngsters dying from this horrible affliction, the more people are aware of this condition the better-only 101 MP's are in the Parliamnet Group trying to make people aware of this-madness-but each day a few more acn be made aware and in time perhaps more of these youngsters can be tested and saved.

n

Jennifer,little comfort ..I know ...but Im thinking of you....will pm you for email addy.. Sally x

Bless you Sally.

n