Wednesday, 4 April 2012

Leaflets, Doctors and fund raising!

There is lots to talk about today and I am not sure how much detail I am going to go into but lets see.

The Leaflet:

So firstly my mother-in-law made an enquiry with a friend who works in the printing business about getting my leaflets printed at a discounted rate. After some negogiating and e-mails with my wife they came to an agreement that we can get 5000 leaflets printed for the price of £0.

Have to say that I was a bit shocked, this is a lot of leaflets and a lot of a discount, but I guess when it comes to people being in pain and trying to help raise awareness people might be more willing to help than you think.

So as a result of this I have been tweaking the leaflets as I want them to be perfect for printing and this has meant that there are some changes, see below for a smaller version of what will hopefully be the final leaflet or go to the resources page to download a copy for yourself (the leaflet should be there soon as Ledderhose leaflet 4).

Ledderhose information leaflet - See resources page for full size copies.
I am not sure what we are going to do with so many leaflets but hopefully we can go some way to raising some money and awareness for Ledderhose, the British Dupuytren's Society and maybe towards my treatment as well.

The Docotrs:

On other news I have heard back from all of the doctors that I have e-mailed with regards to radiotherapy. Prof S in Germany has quoted me 500 Euros per treatment plus I think there is a consultation fee on top of that which with travel might well take the cost above the UK options which are £1750 for the total treatment and the other is £2000.

When I was discussing this with these guys I was of course trying to say that I am still only looking into it and I cannot afford it at the moment and one said well what are your options? I replied that I am more looking into where to get it done rather than what to get done but the actual quote this guy sent me was....

"With regards to 'options'  There are not many to discuss! The best treatment which works is R/T. Surgery is not an option."

So there we have it again everyone thinks that surgery is not an option yet what is the only option that is available on the NHS? Surgery how stupid is that?

Professor S (I am not calling him that to keep it a secret it is because his surname is hard to spell) has also got back to me as I said and he is asking for picture of my feet with both the lump and the areas that hurt marked with pen and send them to him via e-mail. I will post these when I take them, though I am not sure you will all want to see my feet.

He also asked me background questions such as do I have a family history? Do I smoke or drink? Do I have diabetes or epilepsy? And the answer is no I do not have any of the predisposing factors.


In other news we have started to raise money, I hear that family members have started to get sponsorship which is already up to at least £50 and we have also found some old DVDs and things that we no longer want and can trade them in for a total of £80. So although £2000 is a long way off we now have a start, in fact we have over 5%.

Family have also started looking into whether there are DVDs and things that we do not want so the figure above may in fact increae and who knows where it might go. I am also going to start to hand round a sponsorship form at work and seeing as my wife used to work here it might raise a bit of money. Ok so actually I have an update from them and their stuff is also worth £80 so that is already £200 and 10% of the way. A huge thank you to everyone who helps...

Other things are also in the works, I am thinking of doing a cake sale, after all who doesn't love cake? And I can make cake quite well (or so I have been told - see picture below for an example).
Ok So I only made the second smallest layer and my Mum did all the icing but the cake was good.
If anyone wants a copy of my ginger sponge cake recipe then it costs 50p, well I need to raise money someway and I have spent time perfecting this recipe and it is really nice. We were also thinking of doing a sponsored swim but one of the problems with this is that we would be asking the same people for money as we asked for money for the run so we need to find ways of appealing to other crowds which is why I think that the cake sale is a good idea.

As for raising awareness I am also thinking of contacting the local paper again to see if they can make some sort of story out of this, I am not sure what or how the headline could go. Still don't be afraid to ask people, "have you heard of Ledderhose?" as then you can be sure once they leave your company they will have.


Soory for such as long post but there we go, leaflets, Doctors and fund raising. Also thank you for everyone that looks at the blog as you can see on the right I have now had over 5000 page views which is fantastic.