Abbreviations webpage

 

We have a new webpage, to help new patients especially. Let me know what you think. https://dupuytrens-society.org.uk/abbreviations-commonly-used-by-patients-and-doctors/

Please sponsor Julie

One of our members (who has Ledderhose herself) is going to run the London marathon to raise funds for us! We wish her all the best. To find her sponsor page, here is the link: https://2023tcslondonmarathon.enthuse.com/pf/jules-keen We will keep you updated on her progress as she is practicing for the marathon.

Webshop

We have set up a webshop! It has taken quite a while to get to this stage, but it is finally up and running. The address is: https://dupuytren-shop.teemill.com/ You can read what we offer here: https://dupuytrens-society.org.uk/webshop/ Any profits will go to Dr Eaton's Dupuytren Research Group, to help in the search for a biomarker. Delivery is to most countires worldwide, and more products or logos can be added anytime. I hope you like it!

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.

Verapamil

Verapamil gel, used as topical treatment for superficial fibroses in the USA, can now be obtained in the UK.

 

The process for getting hold of Verapamil Gel in the UK: 

It can be prescribed for Dupuytren's, Ledderhose and Peyronie's. The main use in the US is for Ledderhose, some patients get pain relief and shrinking of the nodules but it does not work for all.  Surgery or radiation therapy may still be needed.

You need a prescription from a GP, Podiatrist or other Medical Specialist in one of the conditions (hand surgeon, orthopedic or plastic surgeon, urologist or Urology Surgeon, Foot and Ankle surgeon..) The prescribing doctor can get all information needed from WEPClinical. The doctor also needs to fill in a form explaining your medical condition that the Verapamil is being prescribed for (a template of the form can be obtained from WEPClinical who are instrumental in making this possible. ykhera@wepclinical.com or 0208 0048186 , attention of Yasmin Khera, outreach manager)

 

The paperwork then gets send off to America where a doctor checks it all and writes a US prescription for PD Labs to be allowed to prescribe and mail the product.

Three months supply will be the maximum order for each shipment.

The cost will be:

-£155 per tube, three tubes comes to £465

- Shipping cost £40

-VAT around £35

Total expected cost £540 for three months treatment.

As far as we know if this doesn't work (some patients need 6 months treatment to notice the effect, some use it in total for up to a year) radiation and surgery are still possible.

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.

Trials happening

Exciting times!

The new bank account has been approved, so that is a step forward. Now We just have to get it up and running, and change bank details with all the giving sites and donors. I feel a coffee-binge coming on!

 The Dutch radiotherapy trial for Ledderhose is well under way, there are plans for a Dupuytren's radiotherapy trial in Australia, in Finland is a trial comparing PNF, Xiapex and LF surgery, and the two trials running in our country, RIDD and DISC are recruiting patients all the time. So doctors out there are trying to get more understanding of what treatment to recommend at what stage!

 The official announcement for the Dupuytren Award is expected soon, this year funded by patients and doctors!

Meanwhile if you are going to try any Over The Counter products for you health problems, think of this picture before you spend your money!

 

Have a good Easter or Passover this weekend, or just have a good weekend!

 



Coffee morning in Kent? and ongoing trials

We have a brilliant initiative from a member, Jan Clifton, who would like to meet others with Dupuytren or Ledderhose. She has set aside a morning for this. here are the details:

 If you are interested please reply and I will message you her email.

Coffee morning for Dupuytren/Ledderhose support group

Friday 20th October 10.30am

At Coffee Republic, Bluewater Shopping Centre, Kent

(Unit OU58, Upper Thames Walk between M&S and House of Fraser)

Free parking. Plenty store guides.

Bluewater is off the M25 near Dartford Tunnel. Buses go right into the centre and from Dartford railway station you can get a fast track bus.

 

On another note the Charity Commission wants a lot more information and changes, so that is an ongoing project. I will update once I know more!

 

The DISC trial is now starting in Derby, comparing the longer term results of collagenase and fasciectomy surgery for patients with contracture. More information here.

 

The RIDD trial for early Dupuytren's (nodule stage) is expanding and will soon accept patients not only in Oxford but also in Edinburgh.

 

Please check out these trials!

Getting ready

We are getting ready for the BSSH days! I have bought a conference table cloth and a table runner (and after that found out you can get special conference table cloths printed), I have designed and bought 200 new leaflets, (and a big thank you to Iain Reid who made the logo look better!). We have two volunteers, Ian Ireland for the Friday and Stephen Jones for the Saturday - I can't wait to meet them!

The trustee page on our website now has pictures of all trustees, and tells you who helps in what department.

I am getting somewhere designing an 'aftercare and physical therapy after surgery' leaflet - ok, the name will need shortening a bit. I need to take some hand pictures to show the exercises, but where you need two hands for the exercises I can't take a picture as well, so I will find some help for that.

The weather is atrocious, but fortunately that is not our responsibility. It just means more aches and pains for a lot of people, and especially for those with Ledderhose who may have trouble walking anyway- please be careful!

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!

New trustees

Great news today! We have two new trustees, to help our charity.

Dr George Flanagan, podiatrist surgeon with a special interest in Ledderhose has agreed to join on the Ledderhose side of things, and will be working closely with Gary. Dr Flanagan works in Blackpool NHS hospital, and in private practice in Fylde, and is sure to be an asset to our charity.

Mr David Ralph is joining us on the Peyronie's side. He has already worked with Birgir and Mr John Glees on the recent awareness campaign, and has agreed to become a permanent trustee. He has published extensively on Peyronie's and has a lot of experience treating men with the condition. We are extremely lucky to have him on board.

Welcome gentlemen, thank you so much for your efforts to help in fighting these diseases.

New trustees

Great news today! We have two new trustees, to help our charity.

Dr George Flanagan, podiatrist surgeon with a special interest in Ledderhose has agreed to join on the Ledderhose side of things, and will be working closely with Gary. Dr Flanagan works in Blackpool NHS hospital, and in private practice in Fylde, and is sure to be an asset to our charity.

Mr David Ralph is joining us on the Peyronie's side. He has already worked with Birgir and Mr John Glees on the recent awareness campaign, and has agreed to become a permanent trustee. He has published extensively on Peyronie's and has a lot of experience treating men with the condition. We are extremely lucky to have him on board.

Welcome gentlemen, thank you so much for your efforts to help in fighting these diseases.

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!

What is happening?

This morning I did a radio interview with BBC Radio Nottingham, who wanted a bit of information about Dupuytren's after interviewing a patient. We are trying to raise awareness!
NICE still have not decided on collagenase use, almost 6 months now. I'd love to be a fly on the wall in their internal discussions. They are also reviewing radiotherapy use, but that is a different group so maybe the decision there will come before collagenase?
Our thunderclap is going slow. We need more people to go to the website https://www.thunderclap.it/en/projects/41412-standupforpeyronies , click on support and allow the app to access your friendslist. All it wants with that is to calculate how many people will be reached: IF we reach 100 supporters by mid-June the thunderclap app will post a message on every supporters Facebook or Twitter feed (but NOT on your friends, don't worry!). So it does not cost anything, all it does is make people aware there is a condition called Peyronie's that is not something to be ashamed off!
The website keeps needing more work, links not working or information that is out of date. If you notice anything please go to Contact us and report it to Anna or Gary. We are updating the Peyronie's information (well, Gemma is- thanks Gemma for all the hard work!), so any problem on those pages also please inform one of us.
Meanwhile people look after your body, be gentle with your hands and feet and keep in touch with us!

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/ 

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.  

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

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