Patient Support Meetings
Patient Support Meetings (PSM) are held every year and alternate between US and European locations. These meetings are life changing events for those who attend. In addition to meeting other PCers and sharing experiences, presentations are given by the world's leading scientists and physicians on PC-related topics and the latest PC research.
PCers Experience at PSM
K6a patient "well having been to the very first to the latest conference in England I can say, I was very nervous the first time I attended with my mother and father. We expected it to be just like it is at hospitals and has been all my life where doctors prod and poke, take photos and get other doctors that haven't seen the condition to come and view you like an animal at the zoo. Well on our first night before we all met we were looking all around at the hotel to see who has PC who hasn't. It was very interesting to be on the other side of the equation looking at peoples hands and how they walked etc etc.
I must say it was a relief to find that it was how it has always been in the past, people were friendly and it was so nice to meet others with the condition. For me this is the best part to meet and chat to people that have the same problems in their every day life like I have to cope with. I have made such good friends from the conference and each 2 years when we meet up again with old friends its so good. Plus I have met new people each year its so great, Mary has done a great thing.
Plus its great to see whats happening with the scientists that are actually trying to make drugs to help us and its looks so positive at the moment its just great.
I would urge any one with PC that hasn't been to a conference to go its an excellent experience. Even if you don't go again go at least once you won't regret it."
K16 patient "I attended my first PC conference in 2004 in Dundee, Scotland and was so nervous, and excited too. I had never met anyone with PC before and wasn't sure how I would react. I thought I'd just burst into tears to be honest, I'd felt 'alone' with PC for 40 years. I wasn't sure what to expect either, after so many years of being 'looked at' I'd pretty much had enough, if I'm honest it was only the thought of meeting someone else with PC that made me go. A few of us had chatted online so that did make things easier, but when I walked into the first meeting I was practically shaking.
It was all absolutely fine and Jan came over to give me a hug and I met other PC'ers and I can honestly say for the first time in my life I felt 'normal', like one of the gang. To be in a room full of people who 'get' what you are going through, without having to discuss it or show your feet was fantastic. I have felt an affinity with every PC'er I've met, it's like an unspoken connection. Even if we don't speak the same language, a smile says it all.
I have now been to 4 meetings and loved each one, to see old friends and meet new ones is lovely. I'm not usually a person who makes friends that easily (honest, I'm quite reserved usually) but I've found it so easy at the meetings.
I think I should add that at PSM you absolutely are not forced into doing anything you don't want to do, I'm quite happy to show my feet off.. no one else has to if they don't want to. Mary goes out of her way to make sure everyone feels comfortable, physically and mentally, the meetings are about the PC'er and everything else comes second to that.
So if you have not been before, take it from me, it's the best experience ever, if you have been before... I'll see you again soon xxx."
K6a patient "I am from PA, USA. I am a K6a spontaneous mutation. I am blessed to have connected with the PC Project in Feb, 2004. I am further blessed for myself and my family to have attended 6 PSMs.
I echo what others have already expressed. I had never met or spoke to another PCer until Jan. I remember it like it was yesterday. I no longer felt alone, afraid or like a freak. It doesn't matter if it is your first conference or not. Each and every conference is so wonderful, unique and special. But it is not only about the PSMs it's also about this website.
Words are inadequate to express the unconditional love, support and friendships I have made over these last 4+ years and how wonderful it is to make more. Lastly, the most important comment is (& I know I speak for so many others), the endless love and appreciation to all the doctors, researchers and scientists."
K6a patient "Myself and my husband have attended the uk support meetings with our son (our son has spontaneous pc) so without the support we have received from pc project and meeting other pcers and doctors at the meetings, we would not have any idea how to treat our son's pc. I find it gives me so much information, this enables me to 'educate' my son's doctors and make the right decisions in his care. The friends that we have meet at pc meetings, i am sure will be lifelong friends. Attending the meetings is quite an emotional experience but one that i always treasure."
??? patient "I felt like the lone ranger walking into the saloon when i attended the Pitlochry meeting, but after a short while i was made to feel very welcome and part of the PC family. It was easy to make friends and meet some good people and a few characters, the specialists and doctors where far more approachable than i thought they would be and they where also happy to answer any questions i had about PC.
All in all i will definitely recommend that you get to a patients meeting in the future my first one was great and i look forward to getting to others in the future."