Friday, 1 February 2019

Liverpool research meeting

A week ago I was a guest at Liverpool University, attending a patient meeting organised by Dr Elizabeth Laird and Dr Emma Beamish of the Dupuytrens Research Group. They had invited several patients to attend, two via Skype link and the others in person.

We heard about the research they have started, hoping to get more clarification in the role of several proteins on developing Dupuytren's tissue. For this they need fresh samples of removed Dupuytren tissue, so they have asked nearby hospitals for help.

If any of you is approached to ask to donate their tissue to science  rather than to the incinerator, this is your chance to help future generations! Helping researchers helps us all.

It was a good meeting, lovely to meet the other patients and very impressive to see the lab where the work is taking place. Fingers crossed for a result that could maybe result in a treatment.

Saturday, 29 December 2018

Webinar and New Year

Well the webinar has gone well, and we are already thinking of doing more of them!
If you want to watch the webinar it can be accessed online.
We also managed to have our AGM, it is not an easy feat to get enough trustees online at the same time, as inevitably there will be someone held up in clinic or theatre, another out of the country for conferences and lectures. But we managed.
For next year we will continue to support patients as best we can. We are hoping to do another webinar (or two??) and maybe some question and answer sessions on our closed Facebook group.
The next Dupuytren Conference, planned for 2020, has been confirmed and will take place in Oxford. This will be a meeting of the top doctors and researchers, and we are very excited about it.
As always any help fundraising, organising things or web design and maintenance will be greatly appreciated, just get in touch if you can spare an hour here and there!
 
Meanwhile I hope you all had a good Christmas and wishing everyone a happy New Year, with good health!

Friday, 2 November 2018

upcoming webinar news


Some information about the planned webinar on Monday 19th November 20:00-21:00 (for UK and ROI members only). If you want to participate and have not given me your email address yet, please do so ASAP!)

20:00- 20:005 Dupuytren’s – what is it and who gets it TBA - ? AC

20:05-20:15 Questions and panel discussion

20:15- 20:20 Dupuytren’s surgical treatment options Jeremy Rodrigues

20:20-20:30 Questions and panel discussion

20:30- 20:35 Dupuytren’s the role of radiotherapy Richard Shaffer

20:35-20:45 Questions and panel discussion

20:45- 20:50 Dupuytren’s - current thinking on its treatment and research in the UK Tim Davis

20:50-21:00 Questions and panel discussion

21:00 End



During the hour Matt Gardiner will control the webinar and we hope all of you will join in the discussions and put your point of view and queries forward. The Audience will be able to submit questions by typing them in and we hope to have some audience voting to keep everything interactive. It will be recorded.

Monday, 22 October 2018

Prof Davis Webinar


Dear People



A few months ago Prof T Davis honorary professor in Queens Medical Centre,Nottingham University approached the BDS, asking if we were interested in a presentation on Dupuytren's disease in general and the research he is doing.

We are now a big step further, and the decision has been made to do the presentation in webinar form (internet based seminar), on Monday 19th November 8-9pm.

For now this is meant for UK and ROI members only, as the health system in other countries is very different from ours.


This will be using a program called Zoom, if you don't have it on the computer or tablet the viewing part is free and installs more or less automatic if you click on the link to the webinar, which we will send to interested members in due time. I have used Zoom for webinars many times and not had any malware or spam with the program, so I can personally recommend it.


The plan is to have about 30 minutes presentation first, then 30 minutes where people can ask questions about the disease or the presentation, and we will have some panel members ready to answer them. We hope the webinar will be recorded so it can be accessed later as well.


Now we need to know:


-Who wants to join- if you do we need your email address to send the link to the webinar.

-What would you like to have discussed, any particular topics? (for instance different treatments, why do doctors wait till there is 30-40 degrees contracture, how big is the chance of getting it in more fingers- anything you want clarification on)


Please let us know if you are interested and what topics you would like. The more people mention a certain topic the better the chance it can be covered.


replies to: anna@dupuytrens-society.org.uk


Thursday, 2 August 2018

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.

Tuesday, 3 July 2018

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.

Friday, 4 May 2018

New survey

We have a new survey! Please take a few minutes to tell us your UK experience of getting diagnosed and getting treatment. It will help us raise awareness!

https://www.surveymonkey.co.uk/r/3WX8FLN