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Wednesday, August 09, 2006

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OK guys, it's time for you to help me out again.

I have realised while browsing over the last few months that there is no definitive list of congenital heart support groups on the internet. There are some great partial ones but none that list them all. That's where I need your help.

I have created a new blog called "Congenital Heart Disease" and I would like you to go there and leave a comment mentioning congenital heart disease support groups that you know of. I will then add them to the list and hopfully we can get a good list going over the next few weeks.

So, please, please go there and leave a comment - as you will see - I haven't done much and I know of plenty that I will be adding over the next week.


Tuesday, August 08, 2006

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In my absence yesterday Emma posted comments about Lucy. Lucy underwent a heart transplant yesterday as her CHD is inoperable. All our thoughts are with Lucy as she recovers from this surgery and we hope that she can become a big strong GUCH.

It is great that heart transplants can be undertaken effectively to try to cure heart issues but it is very sad that these issues occur in the first place. When many people think of congenital heart disease they do not think that it could affect someone in such a devastating way. There is still a lot of knowledge to be spread about the effects that it has, not only on the children but also on their parents.

I know that when I tell people that I have congenital heart disease many instantly link it to cholestorol and wonder how I could have heart disease at such a young age. This is maybe the fault of all those adverts for anti-smoking and healthy living - which I am all for - we are told all of the time that if we don't look after ourselves then it will affect us later.

There is not much education about the issues that can't be controlled such as congenital heart disease and I can see why; if you have congenital heart disease then you learn about it, if you don't then you don't.

This makes campaigns such as GUCH's campaign to get free prescriptions for GUCHs much more difficult as the people without congenital heart disease don't have the knowledge about it that we have.

Once again I have finshed somewhere completely different from where I started. Please forgive me for that, I guess I am trying to get some issues off my chest, I am also trying to start some discussions in the comments section so please leave a comment about whether you agree or disagree with what I have said.

Back to the start. Good luck Lucy, I hope one day GUCH will be able to help you as much as they help others.

Sunday, August 06, 2006

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Why is Paul doing this?

This is a question I often ponder when all I want to do is go to bed and he is sat in the study writing his blog for that day. There are a number of reasons why he began this. 1) he wanted a project. 2) He decided that raising money for charity would be a good project. 3) He also wanted to write a blog. And 4) He wanted to provide a different view of CHD.

Paul had never really been involved with anything relating to his heart until recently, he never felt that he needed to be, after all it wasn’t a big part of his life. His heart problems occupied about 30 minutes a year for a check up. Then when I started asking questions he discovered GUCH on the internet. Although Paul could see great benefits into the work of GUCH he still felt that it was not really for him as he no longer really has a heart problem. It then struck him that the reason he feels this is because he has never been treated as though he has a heart problem (except for the life insurance companies!!!). This is what he is hoping to change for point 4, there are many parents out there, and I know that a large amount of this blogs following are parents of children with CHD, not people with a CHD, who will feel that they need to wrap their children in cotton wool because of their diagnosis. Pauls message is don’t.

Yes you should make sure they have antibiotics for the dentist. Don’t however treat them like they will break, they won’t thank you for it, they will either rebel and get green hair, 200 piercings and join a drug taking hippy commune or worse, they will become one of those irritating people who claim that they are allergic to everything and that they need to live in a special bubble because they have never been exposed to life (you know what I mean!!!!!!). Basically what I’m saying is treat them like you would any other kid, their CHD does not define them unless you make it that way.

If you are an adult with CHD and what I have just described is you, then you probably hate me right now, in which case I still make no apology, its not too late…