New Dupuytren video series starting on YouTube

One of the members from our Facebook group has started a series of videos about living with Dupuytrens at a young age. Here is the first of those videos. https://youtube.com/playlist?list=PLmj3PZBta8umXoweLqbQzSZpvCR296iPa

Radiotherapy for Dupuytren's experience wanted, and video interviews for general awareness

Even though NICE has not decided on Xiapex use yet, they have now decided to review the guidance for radiotherapy in early Dupuytren's. So far it was limited guidance with any NHS treatment needing to be done in a centre where the results were special arrangements for clinical government, consent, and audit or research are in place. This has limited the number of centra willing to perform the treatment.

NICE now decided on a consultation where they want patient to fill in a questionaire, to help them decide if the procedure is safe and effective enough and if special consent is needed.

So we are looking for any patients who have had radiotherapy treatment and are willing to help, to start by filling in a questionaire, maybe at some stage one or two will be asked to come to London or Manchester for the appraisal if NICE wants to ask more questions (that is what happened with the Xiapex appraisal, but you can just say no if you can't come).

So please, anyone who had radiotherapy and wants to help try and make it available for more patients, contact me on anna@dupuytrens-society.org.uk , or via our Facebook page or group.

We are also still looking for people to do a video interview with SayCommunications on how Dupuytren's has affected their life, everyday tasks, work and / or hobbies, for an awareness campaign.

This will be to explain to doctors and the rest of the community that even if Dupuytren's is not dangerous it does need  treatment before a patients hands get really bad.

And of course we are still working on a campaign for Peyronie's, Dupuytren's little brother disease that nobody likes to talk about. But we will change that!

So if you want to help us with any of these causes, use my email, go via the website on the contact us page, go to our Facebook page.. get in touch!!

changing the website

So we decided a while ago that our website was growing out of control. Henry Orton did a brilliant job on it, but now it was time for a professional to give us some input and see how we could make it easier to navigate without loosing anything, and maybe even add some of Gary's video's to the site.

 

Therefore yesterday I spend a few hours talking to someone I met, who does this kind of thing regularly. I think we spoke in English, but nothing like what I learned at school! However I have a reasonable idea what he meant and know what I need to do next, go through the whole site, check links and see if they still work and if they take the viewer of our site ( not good, better to let them open in a new link, fortunately he knows how to do that); decide on templates, search function, what needs to go under what heading, how many headings.. You name it, we need to decide on it.

Any input will be appreciated, just use the links on the website or facebook.

 

We are not doing a hangout today, but one or two of us may participate in the AGM of the International Dupuytren's Society. ( Gary, maybe myself) That will be interesting, they are a much bigger charity with links all over the world.

 

Time now to wrap a few Cheistmas present and write some cards before I start on the website I think.

 

Take care everyone, please don't forgetto give me your thoughts on the website and how we can improve it!



Anna

Typing with and without the gloves

So as part of my Dupuytren's Day, or Day with Dupuytren's I wanted to do a typing test and see how I can type with and without the gloves so below you can find my attempts at this task and the video, I have recorded more and after I have edited the videos and put them all together I will post it, so far I am finding the experience in most tasks more awkward than severely problematic but feel that if this was permanent I would struggle. I feel things may differ here: (I am not correcting either set of text other then the automatic response that I have when typing to backspace and correct). 

You can find the video here or it will be added to this post once YouTube search finds the post. (Sorry about the Pringles pot in the background I am not trying to promote them in anyway) 

Typing without the gloves: 

 This is just a test of me typing without the gloves to see as a comparison how well I can type and see what difference wearing the gloves makes, this is my normal typing and hopefully as you can see I am not making too many mistakes that I cannot correct straight away, this should be reflected in the text which I have not corrected other than the automatic corrections. 

With popper on: 

This ids iis me trying top typw with the ngloves on asndf kit is not going very well. 

Summary: 

That was fairly conclusive I think, typing there was such a struggle, I do type a lot and I think because it is something that I find quite natural to do I struggled when it became unnatural.