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

 

Wednesday, 25 April 2018

Patietns needed

To all UK Dupeys! A professor in Nottingham is looking for Dup patients to form a patient advisory group, to help him design research that is important for patients. Anyone in the (larger) area of Nottingham who is willing and able to help with that? A great opportunity to move treatment and disease understanding forward!
email me on anna@dupuytrens-society.org.uk, respond on Facebook https://www.facebook.com/britdupsoc/  or on Twitter please! @Dupuytrens

Saturday, 21 April 2018

Website news and Dupuytren Award 2018 news

Our website has been updated! Please let me know what you think, I think it looks more professional (shame I can't take the credit) and will be easier to navigate. If you find any problems, let us know.

On another note: the Dupuytren Award sponsored by the BDS and the American DDSG Facebook group has been awarded, and the certificate will be given to the recipient at the BSSH meeting in Cardiff later this year.

Massive congratulations and a big THANK YOU for researching our pesky problems go to Dr Michael Ng!!

Friday, 30 March 2018

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!
 


Monday, 5 February 2018

Fundraiser for the Dupuytren Award

We have started a fundraiser!
We decided in co-operation with an American Facebook group to do a fundraiser, hoping to finance the International Dupuytren Award. This is a reward given to (or split over) the most promising Dupuytren research yearly, basic scientific or clinical (or both).

Sponsoring this award will show researchers and surgeons that patient groups are interested in new treatments, and want to be involved. After a few months of discussions and trying to organise it, here we go!

If you can and want to contribute, however little you can give, go to the International Dupuytren Society page and use the first donate button. Thank you for your contribution!
https://www.dupuytren-online.info/donations.html

Let's show the scientists what we are made off.