Forum Replies Created
I am really sorry to hear this news. I would like to echo Pan’s comments and say that we are here for you.
My very best wishes for you and your daughters.
Good to hear of progress Pan. Keep up the good work.
Is there any new news about Pan? It would be good if there was any research news around for example?
Sorry to hear about this. It may not be as straightforward as you think in Devon – they are blocking us getting tested at the moment – they see it as opening a can of worms – and that’s just at the adult level. I’ve been trying to resolve this for two years. I hope you have more success but you will need to push them hard.
Well done for getting this out Pan.
That’s great – well done for putting that together Pan. Although I would say that the testing is not quite as simple as this – 2 years since I first saw a gp about the potential and still we are only marginally further forward. They still have not carried out the test as the geneticist is reluctant- says it can open a can of worms for all the extended family. It goes on.
I will keep looking out for your posts Surinder and thinking of you. I share your feelings about future generations. SKH
Crossing fingers the anti biotics kick in and knock the pneumonia on the head Surinder.
I just wanted to say I am thinking of you. I read all your posts but I can’t add anything that would be helpful. So, just to say we are here.
Hi Patti and welcome! I know it’s a scary time but it sounds like your doctor will help you with your next steps.
Hi there and welcome!
Well done Pan!
That’s a great first step
I’ve tried but the forum doesn’t put your posts up for months which is hopeless. However I wonder if they would support your endeavours in the uk
Pan have you talked to the LFS.org about your ideas?
I would have thought the lfsassociation.org would be the best bet?