new radiotherapy videos

We have started recording new (short) videos explaining a bit more about radiotherapy, each based on one question. Dr Shaffer has made a list of questions he gets asked many time, and we are going through them together. The plan is for them to start appearing on our YouTube channel shortly, and in anticipation Dr Shaffer has posted a new blogpage as well: When is it too early to have radiotherapy Preparations for the online Dupuytren conference are well on the way, as the main accent will be on research we are hoping for a few good webinars or online meetings, the abstracts sure look great! As soon as there are videos for patients to see we will let everyone know. Join us on our Facebook group, or send me an email if you have any questions. Take care everyone!

Radiotherapy Video

We have a present for you! With thanks to Dr Richard Shaffer for the lecture and the interview, and to Mr Ian Ireland for the editing. 

A video on Radiation Therapy for Dupuytrens and Ledderhose. 

https://youtu.be/4hs66soALbM

 

We attempted a Teams patient meeting last Saturday. It worked, and I am planning to do it again. if you're interested, send me your email address.

 

More news coming soon.

 

A Ledderhose Webinar coming up!

Our New Years present to you:

We have started planning our Ledderhose Webinar! 100 attendees possible, you need to register via the link below. It will be Sunday 26th January 2020, at 4pm GMT. Speakers are listed below. Attendees from anywhere are welcome to attend, no restrictions.

Gary Manley - introduction, personal story, patients view, Ledderhose Blog

Dr Markus Maiden-Tilsen - GP perspective, ultrasound diagnosis and steroid injection?

Mr George Flanaghan - NHS and private options in the UK?

Dr Richard Shaffer-Radiotherapy when and what age/patient? Side effects, results?

Dr Eddie Davis- treatment options in the US including Verapamil and Hyaluronidase?

 

You are invited to a Zoom webinar.

When: Jan 26, 2020 04:00 PM London (= 16.00 hours GMT)

Topic: Ledderhose Disease

Register in advance for this webinar:

https://zoom.us/webinar/register/WN_xk2Ndjp-T1ek-QsS6-b40g

After registering, you will receive a confirmation email containing information about joining the webinar.

good news for Ledderhose patients in Glasgow

Some good news!

In the Beatson Centre in Glasgow patients from West Scotland can receive radiation treatment for Ledderhose. Patients from other parts of Scotland can ask their clinicians to apply but are not guaranteed to be accepted. Clinicians are to contact Mr Schipani for more information.

The first patient is actually being treated this week, I hope the response to treatment is good and the clinicians are happy about this new treatment modality.

On a sad note the NHS is considering restricting certain operations even more, and Dupuytren's surgery is one of the procedures named as 'ineffective' and doing more harm than good. The Hand Surgeons (BSSH) have already made a statement and I have offered the Charities help if there is anything we can do in a consultation to show surgery is effective.

NICE radiotherapy guidance

NICE has put the latest Radiotherapy guidelines on their website. It will remain available on the NHS for Dupuytren's but limited to clinics that can and will perform audits of the results. There are no safety concerns for the treatment, and repeat treatment is a possibility. So for now not much changes, and clinics that perform RT on the NHS should be able to continue doing so as long as the patient's CCG pays. We are happy with this decision!

News and another interesting article

Another good article has been published online, about the results of surgery for Dupuytren's. http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD010143.pub2/epdf   The main writer is Mr J N Rodrigues, it is part of his thesis study.

On Wednesday 7th Dec we are hoping to have the next trustee meeting, it will be partly face to face and those who can't come will try to connect via Skype. Our Secretariat Gemma has arranged it all, and it must have been a lot of work! Mr David Ralph has kindly offered the use of his office for it. It will be good to meet some people face to face!

We had the next meeting with NICE about the use of Xiapex, now we are waiting for their next decision. I have told them that in the charities opinion Xiapex is the last hope for some patients, and therefore we do not want a blanket ban, we will be happy with limited guidance. But we just have to wait and see now. The manufacturers were well represented, and NICE had one hand surgeon (one of our trustees, but I am not sure if he represented us or the BSSH) on a conference call. Thank you Mr Henk Giele for taking the time to join the post-appeal meeting!

The decision on radiotherapy is due soon, we will keep you updated for that. For now, have a good day, wrap up warm if you go outside!

A new study on treatment results has been done

Things are happening in the world of Dupuytren's.
On 24th Nov we are attending the next NICE meeting, like a never ending story through the years! This one is post-appeal, to hear wat the Decision Support Unit has come up with, and yet again plead the patients case that surgery is not the be all and end all for every single patient, though it helps a lot of us (me included).

I have been in communication with Mr Jeremy Rodrigues, a doctor who has done an extensive study  assessing the results of Dupuytren's treatment, what influences it and how can we best  measure it. He has written a thesis on this, sadly it is not in the public domain yet. However the summary of his findings are on our research page! http://dupuytrens-society.org.uk/ongoing-research/

In Belgium Dr Ilse DeGreef, maybe THE foremost Dupuytren surgeon of their country, has started a Dupuytren Fund to raise money for more research, she would like to banish this condition for good. So would we! More information will follow on our research page in the next few weeks I hope.

I will keep you updated on the NICE proceedings, there is movement in the Radiotherapy appraisal as well. Have a good day for now!

Waiting for NICE and stem cell research in New Zealand

Well the weather has definitely turned cold and miserable, the sky in Wigan is grey, the air wet and cold. So pamper your hands feet and shoulders, they don't like this weather!

 

At the end of the November NICE will hold the next appraisal meeting on Xiapex (almost a year after the appeal, 6 days short!). I have applied for a place to observe, now waiting for approval to attend. You would think if they send you an invitation, you are already approved?

 

No news on the radiotherapy front, don't expect anything there till December at least.

 

In Wellington New Zealand the stem cell research is continuing, and the researchers have answered my email and may write a paragraph for our research page. Can't wait! http://gmri.org.nz/cms/the-gmri-lays-foundation-blocks-for-budding-researchers/

 

We have a link to our website on MyTherapyApp, a useful app that reminds people to take tablets, do their physiotherapy exercises and keep themselves as healthy as possible. http://gmri.org.nz/cms/the-gmri-lays-foundation-blocks-for-budding-researchers/

 

A lot of  hand surgeons have travelled to Buenos Aires for a conference, they are enjoying good lectures and round table discussions, good weather and more important the chance to get to know each other and discuss cases and treatments in an informal setting. These conferences are what makes international cooperation possible. I wish them all a good and informative time!

 

Gary just walked to the top of Mount Snowden, how is that for a post-radiotherapy for Ledderhose achievement! Well done Gary, we are all proud of you!

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

A new trustee and NICE proposed guidelines for radiotherapy

It would seem it was to quick last time, I can now introduce another trustee. Mr Mike Hayton BSc(hons) MBChB, FRCS (Trauma and Orth), FFSEM(UK) has joined us. He is a Dupuytren's expert, a consultant surgeon who works in Manchester and Wrightington Hospital and has a world of experience. he performs all surgical treatments possible for Dupuytren's including Xiapex and PNF, and has been active in the NICE appraisal as well as presenting at and attending conferences, teaching lectures and workshops and in general doing all he can for Dupuytren's patients.

And with luck there will be more soon! We also need active patient members, people to help with patient and doctors contacts, fundraising, bring in new ideas for the charity, webdesign, whatever your expertise is!

We need anyone who feels strongly about treatment being available on the NHS to consider responding to NICE' proposed guidelines for radiotherapy for Dupuytren's. You have to register, and read the proposed guidelines then give your comments, which can be very technical about a certain point or just general about the whole paper stating what you think, why radiotherapy is an important options for patients and why you feel the NHS should offer it at the right stage of the disease. Especially those who have had radiotherapy either private or via the NHS are well suited to give their experiences and opinion.
Or if you are against all this you can also comment, with reasons!
https://www.nice.org.uk/guidance/indevelopment/GID-IPG10022/consultation/html-content

The new page is progressing well, though all this trustee welcoming is slowing it down a bit. Not to worry, we shall get there.

More soon, when we have news again! Look after yourselves and visit us on Facebook or Twitter.

July 2016

We had a trustee meeting last week, everyone agreed the Peyronie's campaign had been a success and the message went further than we had expected. Now to decide whether to do the same thing for Dupuytren's and Ledderhose. Dupuytren's has had quite a bit of attention in the media with first Pfizer, then Sobi doing awareness campaigns. Ledderhose is the forgotten condition that gets hidden away in shoes and nobody notices it.

 

The BSSH together with the JLA (James Lind Alliance) have a survey they would like patients in Britain with hand or wrist conditions to take (or those that care for a patient with hand or wrist problems) Check this page for more information and links to the survey. http://www.bssh.ac.uk/patients/bssh_james_lind_alliance_partnership.aspx  

 

We have started writing to researchers hoping to put together a webpage on research being done at the moment. Ideally every team would write a few lines for us explaining their research and what they are hoping to achieve. After 2 days I had 3 replies already, so far so good. Only 15 more replies to come I hope!

 

We are still waiting for NICE to make their final decision on Xiapex after it went back to the appraisal committee, and for a different group from NICE to make a decision about radiotherapy. Let's hope both decisions are patient friendly and allow access to the treatments the patients want!

Keep well and look after yourself folks!

Nice appeal decision!!

We have a decision! It has taken almost 7 months, but NICE have decided that the appeal should be upheald. Not for the whole of the Dupuytren's community, they still prefer patients to have PNF but for those who are not suitable we can argue the case again. https://www.nice.org.uk/guidance/GID-TAG364/documents/appeal-decision So back to appraisal it is.
Anyone who wants to know what the decision was based on, this document gives the arguments and reasoning. And for someone interested in the whole process: the documents can be found here: https://www.nice.org.uk/guidance/indevelopment/gid-tag364/documents

On another note the Pulvertaft Hand Centre in Derby would like to know what patients feel about splinting, especially after PNF. https://www.surveymonkey.co.uk/r/splintingfordupuytrens  It is a short survey, so won't take much of your time! Go ahead and do it.

The Peyronie's campaign has reached a lot of people and countries, and we are now considering how to build on that. Our Thunderclap reached the 100 supporters-limit, thank you to everyone who supported! We will keep you informed of any other projects we start, for now it is back to appraisal on Xiapex and hoping NICE makes the right decision on Radiotherapy. Exciting times for Dupuytren's patients.

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!!

Still waiting on NICE

I have been waiting for a decision from NICE about the appeal dated November last year. We are still waiting, first their was 'an issue', now the need more 'internal discussions'. It seems to be a difficult one for them, or maybe thay have a stalemate on the decision? It has been just over 4 months now, not that I am counting!

We have started the Peyronie's campaign, the survey is now closed so we will be able to get on to the next step, extracting the information form the answers soon. Birgir and Gemma are working hard on this.

The website is slowly undergoing some changes, the Peyronie's section is being re-written as that was very meagre, the other sections are being changed bit by bit.  A lot of work, and some things we want to do won't happen because we don't know how ( a WordPress plug-in I wanted to use started the instructions with: move  the widget to the sidebar..- what is a widget, where do I find it, which sidebar, what do you mean? So I will find another solution).

Gary managed to run half a marathon, pretty amazing seeing he was using a walking stick a few years ago! The power of radiotherapy shows.

We have added a Pinterest button to most webpages, so anyone using Pinterest can add our info to their board.

As soon as we hear a decision from NICE I will let everyone know!

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!

Letter to my MP

 Two month almost since my last blog! In that time NICE has considered all comments we send them (and the BSSH send, and other people as well I hope) and they will make their decision on 9th February. We have approached two MP's, the first one asked a written question and the ministers reply had nothing to do with the question asked, so then I approached my MP about the fact that patients would like a choice of surgery or no surgery, and in Wales and Scotland the collagenase injections have been approved. Yvonne Fovargue MP has passed our concerns on to the Secretary of State for Health and the Shadow Health Team, so we'll see what that achieves.

 

Gary has been on local television and in his local papers promoting awareness of Ledderhose and Dupuytren's and radiotherapy for these conditions.

 

Xiapex has been given European approval for use in Peyronie's, seeing that multiple injections are needed I can't see it being available on the NHS any time soon..

 

The IDS has had their AGM, that means it will be time for ours soon. As the last one was a complete wash-out, I am not looking forward to this years meeting. But I suppose we have to do it. Sometime soon. So please see this as advance warning, anyone who would like to join in (I may try Skype this year, or Google Hangout again) please let me know.

Initial Data from Survey

So today I had a chance to look through the 1st 90 sets of survey results, hopefully there will be many more. So the first graph below shows just that the average age of diagnosis for the survey group is mid forties and the max is 68 and the low was 12. I think that this combined the results for the second graph suggest either that we are generally diagnosed by the time we are 60 or that people over 60 are less likely to take an internet poll. Graph 2 shows an increasing number of people being diagnosed with age until they are over 59 when the number drops significantly.

The above graph, graph number 3, shows that nearly 40% of people taking the poll had the condition in more two limbs, about 30% in 1 limb and about 10% each in 3 or 4. This really just shows you have about 7 in 10 chance of getting them in 2 or more limbs. Interesting that it seems to be present more often in 2 limbs than 1.

The below graph show that percentage of people taking the survey who may be at risk due to each risk factor (blue). Note that for the family history result I look only at people who knew yes or no, interestingly this showed that over 60% of people had a family history of the condition. In red, as the UK had the highest number of participants, I tried to fine the rough UK average for each risk factor, this showed that there was almost double the number of smokers in the patient group compared to the UK public, but of course we do not know whether they were smoking before getting the condition or not. DD/LD patients seem to drink less than the national average and for the other there are probably too smaller number of people to say anything apart from there were more diabetes patients than I would expect from a random sample of 90 people.

 I then split the people with / without and unsure of family history into separate groups and looked to see if there was a difference in the average number of limbs in which the patient suffered. The numbers are too small to say if there is a difference and the unreliability of knowing the medical history of your family but the total average for all patients was helpfully exactly 2. For patients with a family history it was 2.2 and without and unknown were both 1.8. If we take the results for with and without family history at face value it suggests that those with a family history are at a slight increased risk of getting it in more places.

 There was no significant difference in the ages with which those with and without a family history get the condition, with there only being a few years difference in the averages.

 The next 2 graphs look at the same as the above but for smokers and non-smokers and basically smoking appears to make no difference to number of limbs or age of onset.

 Note that I know I have spelt NA (when spelt out in full) wrong but I didn't have the chance to fix it before doing everything and I am really busy this weekend.

Dupuytren's Treatments:

Interesting I next looked at the treatments the patients received. The highest amount of patients had surgery, interestingly it came back in 17 patients and didn't in 8 and of those that had it only 6 would recommend it and even those I was only asking what patients would recommend 9 people actually said don't get surgery. Typically it came back in about 4 years.

NA was not popular in terms of numbers, neither was physio but both had 100% success in the 3 patients that had those treatments, interesting and I would like to know how severe the physio cases were. Steroid injections had been used in 2 people, in neither did it come back but neither would recommend.

Xiapex stood out, although only 3 patients had it, in all it came back and inn an average time of only 1 year, 1 person still recommended and one said avoid the other said nothing.

Radiotherapy performed fairly well.with 5 patients have no disease come back and 2 having it come back in an average of 4 years but of the 7 patients 5 would recommend it.

 For ledderhose treatments there were not so many treatment options employed.

7 patients had surgery, in 5 it came back in an average time of 2.5 years, 1 person would recommend it whilst 5 said to avoid.

1 person had a steroid injection and it did not come back.

7 patients had radiotherapy for Ledderhose, in no patients has it yet to come back and all patients would recommend. Make what you want of that.

I still want to check whether the risk factors increase the chances of the diseases coming back, do if you have a strong family history have the treatments been less successful, etc etc.

Nothing conclusive and more data would be great and some potential trends still to look at, great to have some data though, particularly the information on the treatment options.

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.

I just had a week holiday sight seeing in Edinburgh. Beautiful city, very tiring walking as the street go up and down constantly. But it makes for lovely panoramic views. And hardly any rain, that was a bonus! We spend the last day of the week at the Royal Highland Show, loved it. Seeing the animals, all different breeds, all healthy and well. Agriculture is so important for the country.

My mother asked me if the eye-roller with caffeine that I have been using since January to try and slow down the nodules in my fingers is making a difference. (http://www.ncbi.nlm.nih.gov/pubmed/21612641?dopt=Abstract) I can't say really, don't know how fast they would have grown without it. But just the idea that I am not waiting to go worse but doing something is a positive thing, so I'll keep using the roller.  And drinking tea and coffee. And now and then a glass of red wine for the anti-oxidants, or having a curry for the turmeric in it, (http://dupuytrenfoundation.blogspot.co.uk/   see Saturday Sept 24, 2011 entry). Don't like green tea, or ginseng in food, so I'll skip those two.  On the whole it makes for a varied diet, especially if  I add some fish for the fish oil as well.. Try what I can to subdue this condition.

Time for another cup of black tea now, before Judith and I are going to talk via Google hangouts to discuss a few articles on the natural progression of Dupuytren's, as we need a bit more ammunition for our reply to the BSSH about radiotherapy. At least we are making good progress there, and Wolfgang of the International Dupuytren's Society and Mr R Shaffer (http://www.dupuytrens-radiotherapy.co.uk/about.php have promised to help finding articles or even editing the letter ( Wolfgang, he is far better with computer things than I am, I did not manage to get our logo where I wanted it in the letter, he did)

Anna