Frozen shoulder trial opening more centres

Message from Professor Nanchahal (who was the person behind the RIDD trial) The Anti-Freaze-F trial of adalimumab for early-stage frozen shoulder is progressing, they are taking in patients in FOUR sites now! A high proportion (possibly around 50%) of people with Dupuytren’s disease also develop frozen shoulder. The trial now has 4 recruitment centres open, with another 2 in the process of opening (https://aff.octru.ox.ac.uk/sites-4). They will add the additional sites to the web page as soon as they open. the Anti-Freaze-F trial of adalimumab for early-stage frozen shoulder to the attention of your membership. The pain-predominant early stage of frozen shoulder only lasts about 3 months so we have a very short time window in which to enrol patients and administer the intervention. So if you think you are starting woth frozen shoulder, and you are near any of the centres (Conquest Hospital East Sussex, University Hospital Birmingham. Sandwell and West brimingham NHS Hospital, or United Lincolnshire Hospital), do consider asking your primary healthcare provider (GP) for referral to join the trial.

Can you help?

Oyez oyez! Calling all people in Oxfordshire UK or surroundings who have personal experience with Frozen Shoulder. NDORMS, the Nuffield Department of Orthopaedics, Rheumatology and Muskuloskeletal Sciences part of Oxford University, want to study Frozen Shoulder. Please help them if you can! email:  aff@kennedy.ox.ac.uk

 

 

Well we have finally finished our reply to the BSSH about radiotherapy,  that letter will be on it's way early next week. It has been a job and a half finding the right articles, but at last we managed.

And just as you think the website is complete for now- I noticed the bit on Garrod's pads and dorsal nodules was missing! So I have re-written that, and emailed it to our webmaster, I hope he'll be able to add it in soon.

What next? For a while I have been thinking about wriiting a more in-depth piece on the way fibroma's form, but that would be a big job, and as the scientists constantly change their minds and find new things, would need to be kept up to date at least monthly. So I'm not sure yet, but it may come.

My shoulders ( both sides now) are still playing up, I feel like I should be an expert on frozen shoulders but if someone asks how do you know if you've got a frozen shoulder I don't have an answer, as my two have developed so differently. Really the main thing was pain, stiffening up, and with both I noticed I started saying 'Ow' when stretching the arm forward or sideways to grab something. Not very specific is it?  That's Dupuytren's, no two cases are the same.

I reads omething this week that Boris Karloff may have had Dupuytren's, and Bill Owen as well? Could not find any conformation, so if anyone had compelling pictured of their hands I'd love to see them.

working on the wbesite still...

It is time for an update on what is happening. 
Over the last few weeks I have spend most of my time downloading pages from the BDS website, editing the text and the hyperlinks, only to find out  a few days later that all the hyperlinks edits I made had not been saved, even if I did them in Word 2007. Still don't know why. So I had to do it all again in OpenOffice.
That seems to have worked, and I have now emailed the page to a very nice person who is putting together a new website on his domain for us.
We are not sure yet if we are going to move the tag from 1 site to the other so we can keep the name the same, or if the new site will have a slightly different name. That only needs to be decided once the new site is set up with all links working etcetera.
I have been in contact with Wolfgang Wach from the International Dupuytren's Society, we still need to reply to the BSSH on their stance against radiotherapy. We have not been able to find some of the artciles they quote, even the radiologists we asked have not found them. And it's not easy arguing about the conclusions in a text you have not read. I will give it another try later on.
Healthwise my frozen shoulder is playing up still, I am covered in bruises from the physiotherapy and even my physio does not understand why my shoulder still won't move normal after all the treatment I had. I would not recommend frozen shoulders to anyone!

A quiet week.

Gary on holiday, Judith not well.. a quiet week, not much being done where the BDS is concerned.

I checked some emails, kept an eye on our facebook page- did you notice Mr. Chris Bainbridge posted that he has had good results treating advanced cases of Dupuytren's with Xiapex? That is very encouraging news.

I have been looking at our shop on http://www.cafepress.co.uk/britishdupsoc . Would it look very strange if I gave friends and family a bumpersticker for Christmas? And do I care if it seems a strange present? Spreading awareness of Dupuytren's and Ledderhose is worth something too!

After 9 months painful physiotherapy even my physio does not understand why my ( still frozen) shoulder still won't move normally. I am almost ready to give up and just accept a limited range of movements. Painfree movements would be nice though. Maybe try a few more sessions, and keep exercising, swinging weights around to stretch the capsule and ligaments.

I hope to do a hangout with Judith on Sunday, and may have another report then.