The Young Hearts Conference 2008 – Finland – 13.7.08 to 19.7.08Written by: Graham Ellis 
The story of the 2008 Young Hearts Conference begins for me in March when I found out I was fortunate enough to have been chosen to represent GUCH for the first time in Tampere, Finland. The hard work of organising and planning for the conference for the Finns, of course, began in earnest after the Norway conference two years ago.
Along with myself, GUCH was represented in Finland by Shelagh, Charlie and Emily. Paul, due to his involvement on the board of the ECHG (European Congenital Hearts Groups), the umbrella committee aiming to further communication and co-operation between the various European congenital heart patient organisations, had gone out the day before.
I arrived in Finland with all the excitement and anticipation one would expect a person to have who was travelling to a new country and getting involved with something that was both new and felt like a very positive and worthwhile thing to be getting involved with. The Finns met us with a very warm welcome and although we arrived very late on the Sunday after a day of arrivals, we were greeted with smiles that would be there all week until we departed amongst a sea of hugs and a wave of emotions. The whole conference was also very well organised and every lecture and activity arranged went very smoothly, really helping to make it a great week. In fact I’d like to take this opportunity to thank all the Finns once again for all their efforts and warmth – it really was appreciated.
What did we get up to? What was it all about? We were based at the Varala Sports Institute positioned on the shore of the beautiful Lake Pyhäjärvi just on the outskirts of Tampere. After safely navigating a few of those oddities you stumble upon when entering a new country, like for example hoses by the toilets (and urinals!) and bulkhead like tripping devices by every door frame, the week turned out to be one very busy, action-packed and extremely enjoyable week.
But before I tell you a little about why it was such an enjoyable week, there was a reason we were all there. By getting everyone together at these conferences (there were delegates from 14 different European countries present in Finland) there is an opportunity for GUCHs to exchange ideas about how to run a GUCH group and discuss the issues that matter to them. Chief among the issues discussed in Finland was how to expand patient networks and make more GUCHs aware that there are support groups out there. Another issue high on the agenda was the need for independent adult congenital heart groups separate from the parent groups that are focused on supporting children. This is an issue particularly relevant to many of the GUCH delegates from other European countries as many of them are only part of the parent groups. There were two countries represented in Finland, Russia and Poland, who were just starting to set up a group in their countries and for them, the opportunity to meet and see how other countries have organised their groups, will have hopefully provided them with many useful pointers on how to go about doing this.
Above all else though, this conference provided us GUCHs with the opportunity to share our experiences with those who have gone through similar things. Without wanting to overemphasize the fact, the value of this can be truly enriching. There was a great atmosphere at the conference. It was a happy atmosphere in which people embraced one another and had fun. People talked about their condition and it was very easy to do so but it was just another topic of conversation, it didn’t feel like a comparison of ailments and it wasn’t something anyone felt awkward speaking about. If it came up in conversation it did, if it didn’t, it didn’t. Our conditions united us but the enjoyment came through making friends, chatting about one another’s countries, trying in vain to learn and pronounce a little Finnish and having a laugh. And there were plenty of opportunities for doing just that. The obligatory icebreakers kicked things off before we got to go on a cruise of Lake Pyhäjärvi, sample Nordic walking, karaoke away the night in Tampere, enjoy a wonderful barbeque by the lake, hike through beautiful forests, play in the traditional conference football match and last but most certainly not least, got to savour the Finnish tradition of sauna followed by cold lake!
The sauna/lake combo was an enduring memory for me! The whole week though, will be something I’ll never forget. I feel so proud to have been there and been part of it all. It was an absolute privilege and honour to have met the people that I did – to meet people that care. After having met the passionate and motivated people I did in that week, I am convinced that the ECHG can continue to build networks and convinced that these conferences can continue to be a success.
What was the main thing I got out of the Young Hearts Conference? What message would I like to leave you with?
Many of us who have congenital heart conditions, who may have faced tough times or had to face up to dealing with harsh realities may have issues, subconscious or overt, that have caused mental trauma as much as physical, created psychological barriers as much as physical ones. Those of you who have overcome difficulties should take strength in that and not underestimate what you have overcome. For those, however, who may still have worries or are unaware even that GUCH exists, I know they would benefit greatly from meeting other GUCHs and having the kind of experience I had in Finland.
The overriding feeling I got from the week was re-enforced by, of all things, the lyrics from the Bon Jovi song ‘It’s My Life’, played at the disco on the last night. To me, the line ‘my heart is like an open highway’ struck a chord. Why? Well, life is for living. There needn’t be obstacles or barriers so long as one has good health. Get out there and do what you want to do. Worry about your condition only when you absolutely have to. We, as GUCHs may have particular concerns others don’t have and we may have had to perhaps think about what life is all about just little bit more but we ALL have issues that may hold us back. The people I met that week were having fun, achieving in careers or at university, starting families and simply finding the time and having the compassion to show concern for others. I re-enforced in my own mind that there is more to life than merely surviving, more to life than the daily grind. As important as that is, I realised that one can have fun and fulfilment in life. You just have to get on with it. Life is, or should be, a search for the positives and a search for the happier moments.
If there are GUCHs out there that need just a little help in dealing with the realities of having the condition they have and if there are those, who through meeting with other GUCHs, could have the same sort of realisations I had at the Young Hearts Conference, then expanding networks and making more people aware of these organisations can only be a good thing. |
