Wednesday, 17 July 2013

Meeting with a US Ledderhose patient

Today I met with a US Ledderhose patient. She is someone that I have been in contact with for a while and she was in the UK to meet with Dr Shaffer and decided that whilst she was in the country it would be nice to come down to where I live and have dinner with me and the family. 

It was nice to meet another patient and especially nice that they had made such an effort to come and see us, we really appreciated it. It sounded like she had a really good meeting with Dr Shaffer and she needs to sit down now and work everything out. I will not go into too much detail but she has some really good ideas for moving the blog and more importantly awareness of this condition forward and I have no doubt that having her help can only be a good thing.

It is also awkward to hear compliments but at the same time it was nice to hear how much the blog has helped and it is an odd feeling when you realise that the words you have been writing are actually helping to change peoples lives. She is not the first to say this but she said it with so much thanks and in person, after taking time out from her holiday to make the effort to come see me that it really meant a lot.

Hopefully things will move forwards and I really enjoyed meeting her and hopefully we can now work together as a team to help change peoples lives.