Last Thursday was the NICE meeting on radiotherapy. Ian Ireland very kindly volunteered to go as I could not, and Gemma Matthews went as well.

The meeting could only be observed, but they did mention the statement I had made on behalf of the BDS, statements from other patients and did they really have to assess safety as radiotherapy has been evaluated for so many other conditions already.

The committee members did not seem to have any special knowledge of Dupuytren's, we came across that at the Xiapex appraisal as well but there we had the chance to spend a few hours informing them of what the condition does and means for patients. That was a different group of people, and apparently they had not communicated. I discussed the condition with someone before the questionnaire was made, but that person was not in this committee either. Shame a decision is taken about a treatment for a condition that those who take the decision don't really know much about.

So now we have to wait for the decision.

 

On another note NICE has decided to hold the next Xiapex meeting, a week short of a year after the appeal meeting! Can't accuse them of rushing things.

 

I am still trying to get more scientists on our research page, found a mention of stem cell research in Wellington New Zealand which the researchers think might help us! I hope they are next on my research page. If they reply to my email.

 

Seeing many patients would like to discuss radiotherapy but most doctors tend to dismiss it, I have started making a list of doctors willing to discuss it as potential treatment and even refer for it. If anyone knows of such a doctor please let me know! anna@dupuytrens-society.org.uk

New webpage

We've gone live with our new webpage! It was a lot of work, and I owe a massive 'Thanks' to all the scientists who responded to my emails or my request on Researchgate, and especially those who submitted a written piece. Have a look and let us know what you think! http://dupuytrens-society.org.uk/ongoing-research/

Social media and a new Webpage

The British Dupuytren's Society is on Twitter, we have a Pinterest button and I just joined LinkedIn under my own name, but added the BDS as workplace so we can use it for charity contacts as well. It is going slow, but we are trying to make the best of the social media. I still prefer Facebook, I know what I do with that! Can't get used to only being allowed a very limited number of words for a tweet, and I still don't see the fun of LinkedIn, or maybe there is no fun to it? Anyway, we are trying.

 

I added a new webpage to our website. It is a collection of mentions of hand problens and miracle healing mainly, just to see if the four mentioned by Elliot and Whaley were one-offs or if I could find any others. Judge for yourself, I am not saying they are or are not evidence of Dupuytren's through the centuries.

http://dupuytrens-society.org.uk/hand-problems-and-miracle-cures/  

 Forgive the different fonts, it was all the same on the document I typed, not sure why Wordpress changed it and not sure how to fix it! Any help will be gratefully accepted. (Any 12 year old probably knows Wordpress better than I do!)

 

Genesis Cancer Care is expanding the options for patients with Dupuytren's, Ledderhose or plantar fasciitis, the are now going to offer inital consultations in Nottingham as well as the traditional clinic in Guildford. Treatment can than be done in any of their clinics, either both weeks in the same place or in two different places for those who find it a good opportunity to visit different parts of the UK.

http://www.thedupuytrenspractice.com/dupuytrens-practice-now-available-nottingham/ 

Appeal

 The appeal to NICE has been send (twice, the first one was rejected because I also used the email address they send instead of only the website submission- so don't supply an appeals email address if that should not be used!) and apparently if you submit in two different ways it cancels each other out. So I submitted again, only via the website this time.

 

 Now I started looking at writing a bit about Ledderhose for the book Wolfgang Wach is planning, a completely different challenge, and the two-week deadline he gave is already past but I told him the NICE appeal came first. I need to calculate p-values for this! I really can't remember how to do that, just remember from college 30 years ago that p < 0.05 is significant. So that will be a challenge and a half, or maybe a bit more even. At least I have 2 weeks off work, so I have the time to look into it.

 

 Louise Banks is doing a really good job for us, she has lots of ideas and knows how to give out press releases and look for funding. She is a valuable member of our charity. Together we have decided to look into a new logo for the BDS, it has been on the agenda for a while but we really want to do something about it now. So if anyone has artistic talents and can draw hand with contracture and foot with nodule in a simple but clear way, let me know or send a picture! I tried to draw someting but it looked more like a cloud in the sky. Or something Freddy Kruger had gotten hold off.

Keep your hands and feet warm with this nasty wet weather folks! Love

Anna

NICE or not?

Well as of four days ago NICE does not recommend Xiapex unless in trial settings, patients who've already started on it can continue the treatment but others are condemned to having surgery as far as the nice people at NICE are concerned.

https://www.nice.org.uk/news/press-and-media/nice-proposes-further-research-for-dupuytren%E2%80%99s-contracture-treatment 

We can appeal, but seeing they did not listen to the patients point of view the first time, will they listen a second time? I don't know.

It is something to take into consideration, and all trustees must decide what they want, then we can come to a united decision. I hope to hear from them soon. Anna

Waiting for NICE final decision

Almost crunchtime now, next week NICE make their final decision on collagenase use in England on the NHS public. I am not hopeful, but you never know.

 

We can edit our website again, so I have updated the doctors page with the new information I have, and added a page with tips on how to cope with Dupuytren's or Ledderhose. If anyone has any other good tips email me and I might add them next time! anna@dupuytrens-society.org.uk

 

Prof Nanchahal in Oxford is starting a clinical trial looking into a novel treatment to stop nodules developing into cords. NIHR ( National institute for health research) has put money aside for a trial comparing collagenase in moderate cases with needle aponeurotomy. So this is all positive!!

 

For the links just go to our website, they are on the 'home' page.

 

Birgir has attended a NICE scoping meeting on collagenase treatment for Peyronie's. We are not sure if that is going to progress to an appraisal (ie if NICE is going to consider paying on the NHS).

 

Gary is running more and more, a tribute to his chosen treatment of radiotherapy for his Ledderhose, a few years ago he would not have been ale to contemplate walking any distance, never mind training for a half marathon. And for those who advocate surgery: that is always an option, but seeing there is always a risk of recurrence and painful scarring, this seemed the better first choice to him. And it worked! Gary will be running his half marathon to raise money for Pancreatic Cancer Uk. Any sponsorship will be welcome, can be done via his Ledderhose blog.

Summertime

Time for an update, it has been a while.

Groningen: the conference was good, a lot of very clever people all discussing what they can offer patients and what research needs doing to improve the treatments. There are still distinct fractions, such as radiotherapists versus surgeons, but there was good conversation also between the groups so I hope the differences in opinion are getting less. After all we all want what is best to slow or halt the disease, never mind how it is done. Abstracts of the presented papers can be found online: http://dupuytrensymposium.com/program_2015.php  (scroll to the bottom) and the talks will be put on YouTube.

The Dupuytren's Foundation is hoping to set up a databank with samples from as many ppatients as they can get, to aid in identifying the cause of the disease. PLEASE HELP!! Go to this website http://dupuytrens.org/get-the-newsletter/  and register for the newsletter, they will let you know as soon as the study starts . It would mean having a bloodsample taken, that's all. Anyone with Dup's or Ledderhose in any country, please join.

Since then the website is being transferred, we found a good server but it means I can't update any pages untill the transfer is complete.

I have met up with Lorraine and Louise from Say Communications, Sobi has kindly agreed to fund a secretariat function for 2 days per month for the next 6 months, and Louise will look into funding, membership, a new logo, newsletters to GP's.. all these things we wanted for the BDS but did not have time to do. So all in all the BDS is moving forward. We have 350 followers on our Facebook page, and the Dup Ld and related conditions group is oding even better with 406 members.

All we need now is a cure!

Anna

Conference almost here

Just a quick note- the Dupuytren's conference is on Friday and Saturday, Gary and Anna will be there (Gary is presenting the results of the survey even) and we hope to report back afterwards on what we have learned. In the mean time check out the new Facebook group DART, they are collecting a lot of good information for anyone with Dupuytren's, not just those who want radiotherapy.

More after Groningen!

Dupuytren's in modern literature

Just for the fun of it I looked into books that mention or suggest Dupuytren's in one of the characters. So far I found these:

-Dreampoint by Steve Atkins (someone looking for a cure found by a tribe in Peru)
-Dupuytren's Contracture by Colin Ball (a patient in a coma after complications to his surgery)
-Catastrophe ( a short play) by Samuel Beckett (mentions the hand of a character being clawlike due to fibrous degeneration- Beckett himself had Dupuytren's as well)
-The Hundred days by Patrick O'Brian (Aubrey Maturin book)(a hand only, preserved in wine and brought aboard ship by Amos Jacobsgiven to Maturin as a hand of luck; it is later eaten by a dog )
-Revenge is Sweet + Dead Wrong by Betta Ferrendelli (Samantha Church novels book 2 and 3, mention a charater with a finger bend into his palm)

 

I have not read any of them but will be looking in some charity shops for copies. If anyone knows any more please let me know!

No Guidance yet- nice one!

The time has come for NICE to make their decision, and it seems they are stuck. They have decided more research is needed, thanks to the comments of the handsurgeons (thanks BSSH!) and the patients (meaning: all of us!) who did not want them to reject collagenase. This is good, it means for now it is still up to individual PCT's to decide but they are allowed to accept it, so we still have a chance of getting the treatment that suits the contracture (not all contractures are suitable, some are better treated with surgery).

I am relieved, though I see more work on the horizon for us. But I am sure it will be worth it.

I have decided for now to give up on the idea of doing a science part for the website, my anatomical drawings were not quite up to scratch and my understanding of the affected pathways is decidedly below scratch, so I will look for a few good pages already on the web and seek permission to link to them. I'm sure I will find something.

Designing a new logo has hit the same snag- may lack of drawing talent. Time to think of other ways to get a good logo!

Gary and I are busy planning for the Dupuytren's Conference in May, we have booked accomodation and I have booked my flight, progress is being made! Gary will be presenting the conclusions drawn from the survey he posted a few months ago. I will be trying to gather as much information as I can about recent research and new ideas. And we will have a good time while we're at it!

Our website has been down for a day (or rather: the server was down) but thanks to Richard Proctor of Waveney.com who hosts the site and spend his evening after work sorting it out, the problem was sorted within a day. Good going!

That's all the news for now. Take care of your lumps and cords, be healthy!

 

Nice comments send

 Well the NICE comments have been send on, the last date to do this was 28th November. I have send them one page with my comments on the process, and two pages with patient comments. Will it make a difference? Probably not, but if we don't try we'll never know. I fear patient preference, easier recovery and less scarring is not as important as saving money at the moment.

 We have had help from Linda ( thanks Linda, you're brill!) to get questions asked in parliament, and I have emailed lots of papers and even Embarrassing Bodies to see if they want to do a follow up. A few declined, most did not even answer. But Gary has done one interview (they cut out what he said about NICE and Xiapex but it's good for Ledderhose awareness) and we may have another local newspaper near Gary interested.

https://www.facebook.com/video.php?v=10152868506228648

 On a more positive note there is a clinical trial starting in London treating Peyronie's patients with Xiapex, https://clinicaltrials.gov/ct2/show/NCT02267460  so anyone suffering from nodules and curvature in the penis check out if you could be eligible to join!

 When all this is over gary and I will have to start talking about a science page for the website again, to explain about MMP's and Transforming growthfactors and insulin like growthfactors hat are influencing our hands/ feet/ other bodyparts. My problem is that we did not have those when I went to university, and I still can't get my head around what each little product does. But I'm sure one day it will all click in place. (fingers crossed, lol)

 For now I will search a bit more for news on Dupuytren's or Ledderhose, then do some cleaning and after that go out for lunch with friends- my attempt at having a social life! Have a good day everyone.

 

 

Wintertime started

Well, today winter time has started, it is dark and cold, and I bet you are all feeling it in your hands and feet. Keep warm, don't be ashamed to wear mittens if gloves won't work anymore! For me men's gloves medium to large has been a good options for a long time, as womes gloves always have thin fingers, and bendy ones won't fit in them.

Two weeks ago almost we had our first training day in London, Gary, Henry Orton and I were there. The morning was media training, how to answer questions and try to get your message accross, the afternoon was about Wordpress for when we move the website over. A second day is planned but no date yet.

The 14th October was another morning in Manchester for the next NICE appraisal meeting, this was an extra one but fortunately I happened to have that week off work so I could attend. The team wanted extra information before making their decision. I hope they decide in favour of patients being able to have the Collagenase injections on the NHS if they have a suitable contracture.

My computer problem with my virus scanner not allowing me to access the website is fixed, after the latest AVG free version update I can now keep the program running while I manage the site. This means I can spend a bit more time on it, so I have made some updates on the History page and of course the Doctors and Clinics page, websites and doctors addresses seem to change weekly.

We are thinking about a new logo, the present one was borrowed from the International Dupuytren's Society and can apparently in some countries or societies be seen as rude, a hand with one finger bend down. We must all be rude people, as many of us go through life like that! But anyway, I had seen a picture I really liked, enquired about buying it and got an email back saying we could buy the oicture but not the copyright, so we would not be able to use  it for logo or modify it. No use to us, so back to the drawing board for that one. I will keep you informed.

Gary has been busy with his surveys and is setting up a section on his blog for patients life stories, please feel free to check it out. http://ledderhose.blogspot.co.uk/ 

Anyone who is good at sketching or drawing feel free to have a go at making a logo, ideally somethng with a hand (with one or two bend fingers and a visible cord) and a foot with a lump. Not much to ask is it?

Anna

Egyptian mummy

So I am still looking into evidence of people having Dupuytren's contracture in the past. The picture of a hand in the Chauvet cave is a possible, the mummy that was found in Egypt with bend fingers looks more unlikel. I founf 2 pictures of the hand in a publication, the MCP joints are straight or even hyperextended, the PIP and DIP joints are flexed. So the finger itself is bend but not the joint that connects it to the hand. In Dupuytren's that joint would flex as well, this mummy more likely had ulnar paralysis, a nerve dysfunction possible caused by trauma to the hand or arm. Shame, but we have to be honest about it.

Asklepios and his contemporaries do look interesting, I found 3 cases where a useless hand was made beter by someone standing on it, just like Sigmundr did in the Iceland saga. And I can't think of any other condition that would be cured by someone forcing the hand straight, traumatic cord rupture would be the only explanation. Must have hurt though!

Our training days are not happening, we still have not been able to set a date as Gary is too busy, and the company that was doing it does want more than one person there as it's no good one person only being able to maintain the website, if I'm on holiday, ill or have computer trouble someone else has to be able to take over. My mother offered to be the 2nd person, but seeing she is 74 tomorrow and already has been 'persuaded' to look after the charities finances, I think that wold be a bit too much. Besides we usually go on holiday together, so it would still mean no updates in that time. So we really need some ore people helping with te charity, one of whom who would be willing to spend a day in London to learn more about website maintenance.

 

That's all for now!    Anna

It would seem our summer is coming to an end. A shame, because most Dupuytren's patients have less pain (yes I know it is a painfree disease!) in the warmer weather.

We are still trying to arrange a training day for web maintenance, it's not easy getting 3 people tpgether who all have different work schedules. We'll see what we can do. Meanwhile I have collected some more pictures for the editorial we were working on 6 months ago, thanks to the patients who were willing to share their hands!

Judith is busy babysitting and working, so she has less time to do charity work at the moment. Gary and Wolfgang have put together a survey to get some statistics on Dupuytren's and Ledderhose for the next conference. If you haven't participated yet: this is the address http://esurv.org/online-survey.php?surveyID=LKJLGJ_4263bf5d&u=DupLed  

We have also set up a closed group connected to our Faceboook pages, for people who want a bit more privacy when discussing their medical problems. If you want to join just send a request and we will let you in as soon as we notice.  https://www.facebook.com/groups/1462124944043779/?notif_t=group_added_to_group

I a still looking into Asklepios' healings, have bought a few books via Amazon and Abe Books and I'm having a good time reading about heads being cut off and put back on again, women asking Asklepios to help them get pregnant (which he seemed to have no problem doing!) and all kinds of wonderful cures that you could not use today anymore. As soon as I have something to report I will do so.

For now I think our plan of writing a 'science page' to explain about MMP's, growth factors and transforming factors, catenins and all that kind of stuff that influences the cells in the fascia seems to have been put on hold, I still have trouble getting my head around all that stuff so can't explain it in simple terms on paper either. Besides Asklepios teaching are far more entertaining ('please may I get pregnant?' Ok fine, do you want anything else? 'No only to get pregnant' - 3 years later- 'Please may the baby be born as well?' I thought you did not want anything except pregnancy! ) Good reading.

I hope you are all keeping well.

 

Anna

Appraisal meeting July 2014

The next step in the NICE appraisal is over. We had the meeting on Tuesday, A big thank you to Mr Henk Giele and Mr Chris Bainbridge who took the time to come from their busy practises to attend and answer a lot of questions from the committee. I would have ben in trouble without them. The comittee still did not quite understand Dupuytren's I felt (who does? It does not follow any set pattern, just does what it feels like), and the two clinical experts did a brilliant job explaining that you can never know which patient will respond well to treatment and which won't, that any treatment you give works better if the contracture is not too far advanced, that patients seek medical help when the condition becomes a problem for them, which can be in an early or a late stage depending on their lifestyle.

And now we have to wait for a decision, and that will be a while, as the committee already scheduled another discussion between them in a few months. Unless they have more questions for patients I won't need to attend that one, and I don't think I can say more than I already said and put in my statements and comments. It has been a lot of work, I hope it will have been worth it when the decision comes.

That means now we can start planning for the website training, so someone can explain to me what they mean when asking what 'platform' I use for the website (I thought platforms were for catching the right train!)

The weather does not know what it's doing today, rain and sunshine both in the last half hour. I will stay indoors a bit longer till I decide what to do with my last day off.

July 2014

Thanks to Gary for his post, I have been a bit lazy with the blog recently. So now I will let everyone know what I've been up to.

 

Mainly I have been trying to prepare for the upcoming NICE technology appraisal, the next step in NICE deciding whether to allow Xiapex on the NHS in England or not. I have read through 289 pages of statistical language and formulated a comment. I do not like statistics, too much like high school mathematics!

I also found out I will have to be a patient expert at the meeting, instead of observer, as for different reasons the patients who were nominated pulled out, and the others who had been willing could not arrange to come at short notice. Good thing I had taken the week of work already planning to observe the proceedings! Not having had collagenase injections myself I hope I can give a patients perspective, and explain to the comittee why some patients prefer an injection to surgery. I think I can, having had surgery twice myself anything has to be better that offers a faster recovery and return to normal life, even if it might have to be repeated sooner than surgery.

 

I have also been searching for old texts about Asklepios, or Aesculapius (the ancient Greek healer after whom the doctors Aesculapian Staff is named), as he is supposed to have healed someone with Dupuytren's by touching or massaging their hand. That has not been easy, I send out lots of emails and finally have been pointed toward a book that may help me. Available to read in the Wellcome library in London, but also for not too much money from Amazon, and that way I can take my time over it. So I am waiting for that to arrive, coming from the USA it can be a few weeks.

 

Dupuytren's has been named as a disease that can be caused by working with Vibrating tools, so anyone who has done so for 10 years or more and then develops Dupuytren's has a chance of getting disability payment. https://www.gov.uk/government/publications/dupuytrens-contracture-due-to-hand-transmitted-vibration-iiac-report 

 

That is a short summary of news in the world of DD patients. More news can be found on our facebook page, where I tend to post any links to interesting articles that I find. https://www.facebook.com/britdupsoc?ref_type=bookmark 

 

Keep well and look after your hands! (and other body parts)

Anna

It has been a long time

It has been a long time since I posted on here but I have been very busy with moving house and my main role at the BDS is being the Ledderhose expert, I have still been doing some work on my blog and have had some interest from the company that manufactures the radiotherapy machines (used to treat both DD and LD) and I am hoping that this will to some good exposure on the condition. It is really a case of wait and see though I know they were hoping to get their website updated in the next month and then they had a few other things they wanted to work on with me which all sounded good.

I have also had a lot of patients contacting me, due to the frequency of Ledderhose my blog is not restricted to patients in the UK but rather worldwide and as such I am often contacted by patients from the USA and other countries but it is usually the USA or the UK.

Anna and I are also hopefully going on a few training days soon that should help us with various aspects of the charity work.

Work has also begun on the Dupytren's Symposium which is taking place next year (organised by Wolfgang at the IDS). Hopefully I will be able to attend and maybe even give a patients perspective to the numerous doctors and researches that will be attending.

I think that one of the key things with these conditions is that as time passes we continue to improve knowledge through our interactions with more and more patients and whilst this may not mean we have any new treatments it does mean that we have a better understanding of the success that each treatment is having from the patients point of view.

Thanks everyone for helping with this and remember that there is a personal stories section on the website and if you have time to write yours up to add to it that would be great.

Well, the first part of the AGM, with active trustees of the charity, was a wash-out.  For various reasons only 3 people showed up for the e-conference. It made for easy voting, everything was accepted (new treasurer, Judith just trustee, Anna as chair, membership to be set up) but there was no discussion possible really about the charity moving forwards.

So what's next? I have found a website that may be useful for setting up membership, membermojo, messages some organisations that use it via Facebook and they seem quite happy, so I'll have to work out how to set that up. Maybe this weekend. Apart from that we will start thinking about the upcoming Dupuytren's Conference, next year in the Netherlands. What can we contribute, how many of us want to go, how do we finance it. And we will have to find some more people willing to help with whatever needs doing. That is the next big step, try to organise another electronic conference. But after the failure of the last one, I'm not sure what to do different this time.

On a positive note Judith became a grandmother, a month earlier than expected but everything is ok, parents and baby are very well, the baby is extremely cute and Judith has her work cut out helping the new family. Congratulations to all!

We are a step further again. We have decided to split the AGM in 2, first one for trustees to discuss finances, structure of the charity, official stuff, hopefully a few weeks later one for friends and possible volunteers, to discuss what we need help with and who can do things for us, who wants to become trustee and promise a few hours a month work for us, or can someone take on a project to do and leave it at that?

Things I hope other people can help with:

   -  organise doctors list into counties ( like the PNA list on the website)

   -  someone to check all links on the website regularly

   -  we need someone to help maintaining the website, who knows how to put new pages on a site (either to do this or to explain in laymans term how to do this using Adobe Contribute)  ( there may be a small financial reward available for this from a sponsor)

  -  we need someone to promote the charity, (possibly look into stickers for windows/bags/etc)

  -  Someone to make a list of people treating Dupuytren’s who would like our leaflets and to make a set of sticky labels for someone to put on envelopes to mail them out.  Also, find a supplier of cardboard leaflet dispensers suitable for the leaflets.

 - set up a database of people contacts

 - organise Mendeley better (needs someone familiar with reading research papers - even if they aren’t Dupuytren’s researchers)

Please have a think about this, let me know if you want to attend the AGM or can help in any way ( contact via facebook or website please, I am not sure if I quite understand how Twitter works so we'll leave that out for now)

We are getting somewhere with the new treasurer (my mother), who's setting up a database and now gets statements from the bank to her address.

This means we can think about organising an AGM, we'll need to consider who to ask to participate, how to do the conferencing ( phone, internet?), do a professional one 1st then one for friends, prospective trustees and members? Lots of things to consider, and we definitely need more active trustees or members, as there are many things I can't do or don't have time for, and at the moment that means it just doesn't get done. But how to ask for help is something to discuss at the AGM I suppose. So that will be the next thing to work on, now the editorial for Sobi is finished and the article for the Paget's Society as well.

I am still struggling with the website, anyone notices a problem please let me know, I shall try to correct it as soon as possible!