Wednesday, 6 November 2013

Telephone call with RT equipment manufacturers

Today I had a phone call from the makers of the equipment that was used to do the radiotherapy on my foot. This was only a preliminary call and lasted around 10 minutes.

They asked about my foot and how it was now and then moved on to their plans. They are hoping to create a patient focused article on Ledderhose disease which will hopefully get published in several national papers; I am guessing they are planning on my story being involved in some way with this.
This is something I have tried to pursue by myself but I didn't manage to get any interest. It is good that the company is willing to get behind. The plan for now is for them to go away and to make up some plans and then get a journalist to interview me to go towards the article.

They are also planning on releasing a new patient orientated website on which they would like to have a video interview with me. I know at the end of the day they are a company and they are ultimately looking to make money but if in that process they can find a way to help to raise awareness of Ledderhose disease and radiotherapy as a treatment then I want to help.

I am unsure of how many patients are involved but I can’t imagine it is that many, I mean how many Ledderhose patients leave contact details on-line? Doctors will of course be bound by patient –doctor confidentiality so are unable to share details. I do know though that they have asked Dr Shaffer if they can have a chat with him as well, that can only be a good thing.

I will of course keep everyone up to date through Facebook and here on any progress that is made with this.

Hopefully this is the start of a path towards increasing the awareness of Ledderhose and of radiotherapy as a treatment option.