Post by cclifford on Oct 28, 2016 21:16:44 GMT 1
Dear Natalie and all forum members
I wanted to say a big thank you for setting this online forum up. I have been out of action from GS/BS events for several years sadly and missed the last patient day.
I suffered two serous arrhythmias in December 2013 - our worst nightmare - with several more in 2014. We don't know why although I was certainly under pressure with work trying to manage GS symptoms and complete a difficult project.
I have been going in to hospital since 2009 for regular Mg infusions about every few weeks as even the Mag Tab doesn't seem to get absorbed efficiently.
Although things got rather desperate a couple of years back I have gradually been getting more active again in the rare disease community and have just come back from the Cambridge Rare Disease Network summit which was amazing.
I can't make the December meeting unfortunately as I'm away from the UK but have said to Fiona and Caroline at Addenbrookes that I am happy to help more generally with taking things forward.
There is now so much resource out there for patients groups. Findacure have been providing excellent training if people don't know this yet, and it seems that nationally and internationally so much is happening. They ran an excellent workshop on registries in September. It seems so important to have a patient charity in place to provide advocacy for individual disease, to push toward proper commissioning for the diseases and also to shape rare disease policy that's emerging.
I'm pretty hopeless with social media, don't use Twitter after a bad early experience and have also now more or less wound up my Facebook account after someone who was working for me last year interfered with it maliciously before leaving his job.
If the outcome of the December meeting is that we need to come together again to do something more organisationally I am more than ready to help. I am hopeless with social media and IT but good with organisation and ready to help with government relations and contacts with other charities having worked with the civil service for a number of years and generally good at getting things done cross-border.
I hope everyone is managing and doing OK.
Best wishes
Chris
I wanted to say a big thank you for setting this online forum up. I have been out of action from GS/BS events for several years sadly and missed the last patient day.
I suffered two serous arrhythmias in December 2013 - our worst nightmare - with several more in 2014. We don't know why although I was certainly under pressure with work trying to manage GS symptoms and complete a difficult project.
I have been going in to hospital since 2009 for regular Mg infusions about every few weeks as even the Mag Tab doesn't seem to get absorbed efficiently.
Although things got rather desperate a couple of years back I have gradually been getting more active again in the rare disease community and have just come back from the Cambridge Rare Disease Network summit which was amazing.
I can't make the December meeting unfortunately as I'm away from the UK but have said to Fiona and Caroline at Addenbrookes that I am happy to help more generally with taking things forward.
There is now so much resource out there for patients groups. Findacure have been providing excellent training if people don't know this yet, and it seems that nationally and internationally so much is happening. They ran an excellent workshop on registries in September. It seems so important to have a patient charity in place to provide advocacy for individual disease, to push toward proper commissioning for the diseases and also to shape rare disease policy that's emerging.
I'm pretty hopeless with social media, don't use Twitter after a bad early experience and have also now more or less wound up my Facebook account after someone who was working for me last year interfered with it maliciously before leaving his job.
If the outcome of the December meeting is that we need to come together again to do something more organisationally I am more than ready to help. I am hopeless with social media and IT but good with organisation and ready to help with government relations and contacts with other charities having worked with the civil service for a number of years and generally good at getting things done cross-border.
I hope everyone is managing and doing OK.
Best wishes
Chris