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!

New advisor for the BDS

While NICE is still deliberating, we have some good news: Mr Stephen Jeffrey LCSP of Ealing Massage Therapy http://www.ealingmassagetherapy.co.uk/Dupuytren-s-Massage.html   who has years of experience in massage therapy for Dupuytren's and is happy to share his protocol with therapists the country and indeed the world over has agreed to join our charity in an advisory capacity. Quite a coup!

The Peyronie's survey has finished, we had around 200 responses so that was really good. Thanks to all those who put their embarassment aside and answered the questions. The results will be used for the awareness campaign in a few months. Gemma is working hard on this.

The Dupuytren Foundation is still trying to recruit people worldwide to partake in their research, if you have not done so yet please sign up on http://dupuytrens.org/enroll-in-the-iddb/  

We have added a pinterest plug-in to our website, so anyone wanting to use Pinterest can do so.

Our first newsletter has gone out, if you don't want to miss the next one please become a member of the charity.  

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!

 

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

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

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.