Monday:
I went up to London to the Vodafone Induction day at SeOne. It was an interesting venue as it is just underneath the railway line and you could hear trains going overhead. The talks from two of last years World of Difference candidates were very interesting. Lunch was fantastic – especially the chocolate brownie – one of the nicest I’ve ever had. We also got given our mobile phones which we can use for blogging etc., and some info on media and publicity.
Tuesday:
My first day working for the Association for Glycogen Storage Diseases (AGSD UK) charity. Andrew Wakelin (GSD Type 5 Coordinator) tells me that I am the first person that the charity has ever employed with a salary (thanks to Vodafone), everyone else has been volunteers. I think that is very exciting, but carries with it a huge responsibility to deliver what I have promised: a guide/handbook for McArdle patients, explaining the science behind the disease in clear English. I have drafted a list of topics, and have sent these to a couple of McArdle patients for their comments and suggestions. I have my own ideas of what patients would want to know, but this way I can find out what patients REALLY want to know and make sure that I cover as many of these topics as I can.
Wednesday:
Today I have been contacting professionals to try to find someone willing to offer specific advice as a couple of the topics suggested by patients are not really covered by the medical literature out there (this is the problem with having a really rare disease). I don’t want this handbook to be my own opinion, I want it to be scientifically proven, or based upon recommendations by professionals. I decided to start with the hardest topics, so that I have as much time as possible to try to get answers.
I have also been posting information about my project on various chat-groups for McArdle patients. I have been telling them about the handbook I am writing, and asking them for suggestions of topics for me to cover. This handbook is designed to help and inform patients, so I need to know what topics they find hard to understand.
I have also spent a lot of time reading through the old posts on these chat-groups (especially on the McArdle Facebook page), looking for different topics and for those which people have the most questions about. One example is diet. Medical professionals have different opinions about what the ideal diet for a McArdle patient is, and this means that chatgroup discussions can be interesting, as different patients can be on very different diets. It will be a challenge for me to cover this topic in an open-minded way; trying to discuss the rationale behind each diet, and pros and cons.
