Judith Proctor's Journal

 Does anyone here use Pub Med?

There's an article I want to read on Dupuytren's treatment, and I don't know how to read it.

I'm willing to pay to read it if I can work out how to do so.  The British Dupuytren Society (if we can afford it) probably need to get access to all these online medical journals.

What I'm not sure of is whether Pub Med has the full article or only the abstract.

How does one access online medical journals - what sort of cost is one looking at?

All advice welcomed.

 I'm currently working with a couple of other people who have Dupuytren's to start a new charity in the UK.  The aim is to increase knowledge of the condition so that more people can be detected in the early stages of the disease.  Also, to increase knowledge of the different forms of treatment that exist so that patients know what their best options are.  (being able to sponsor more research would be great in the long term, but at the moment, the existing research isn't widely known so publicising that is top of our agenda)

At present, the standard response from doctors is 'Come back when your finger is too bent for you to be able to use it, and then you can have surgery.'

Surgery can be the best option in some cases, but if Dupuytren's is diagnosed early, then radiotherapy will, in many cases, prevent the disease from progressing at all.  There are also other treatments that have pros and cons compared with surgery.

There's three of us working on the charity at present and we're in touch with some of the medical professionals who treat Dupuytren's.

What we're looking for is people who are willing to volunteer their skills to help with web page design (must be both easy to use and look attractive) and also to help with designing printed leaflets.

Also, as our current finances are precisely zero (we're just in the process of getting a bank account and charity number and all that process), we'd love help from anyone with fund-raising skills - or indeed anyone wanting to make a donation!

Anyone want to help?

Crossposted to http://dupuytrens-uk.livejournal.com/

It's taken time, but radiation treatment for Dupuytren's Contracture is now recognised by NICE (National Institute for Clinical Excellence) as a valid treatment.  This improves the chance of people in the UK being able to get it as a treatment.

Dupuytren's affects around 2 million people in the UK and can leave the hands badly clawed and unable to function properly if it progresses.

Amazingly, there was a surprisingly accurate article in the Daily Mail (Normally, I wouldn't trust anything they have to say regarding health - though I notice they've quoted a study with a particularly high success rate). As the treatment is cheaper and less invasive than the alternatives and is preventative rather than curative, it does have an awful lot going for it.

I'm one of the successes - my hands are still fine several years after treatment and I had no  problems with side-effects.

The NICE guidelines (which include figures for both side-effects and success rate) are here.  (though you have to bear in mind that in around 10% of cases, the disease would not develop further even if left untreated.)

Basically, if you find you have small lumps on your palm (at about the same point where you get calluses when carrying a suitcase), or your fingers won't straighten properly, then you may have Dupuytren's Contracture.   If you are male, over 50, Northern European ancestry and diabetic, then you have quite high odds of being a sufferer.

(But I'm female, not diabetic and was under 50 when diagnosed, so don't assume you have to fit that pattern.)

My thanks to nwhyte for his offer to help, but I've (slightly to my amazement) managed to persuade the Dupuytren Society to add a Paypal button to their web site.

There's no incentive like saying "I'll send you x Euros, if you can get Paypal to work on your site in English".

So, I've just sent them x Euros.  Without the advice of the Dupuytren Society, I would never have sought out radiation therapy for my right hand.  The hand is as good as it was the day it was treated and I've never looked back.

I went to visit my parents last week.  Both had disclaimed any family history of Dupuytren's.  However, when I took a look at their hands, it became evident that my mother definitely has it.  She has a couple of lumps, and growth along one tendon (less developed than mine, but unmistakably Dupuytren's).  My father has a lump in exactly the right place - the twin to one of my lumps, but no growth yet.  (hence, probably Dupuytren's, but one wouldn't say for certain without an ultrasound scan).

This double parental factor probably helps explain why I developed the disease at a relatively early age.  It normally affects people in their sixties and seventies - if you talk to someone in that age range, it is pretty well guaranteed that they will know someone who has it.

I've finished the radiotherapy sessions now.  I'll be getting a follow-up appointment in a few months to see how effective it's been.

 

How much notice does Google take of the country a site is hosted in?

I'm getting deeply puzzled by my Dupuytren's site.  They've done a fair bit of work on the site (doing several things that people have suggested to me, especially Phil), and they've got a lot more links than they used to, but they seem stuck about half way up Google.  They were in the 90s and they're now in the 40s (they actually got into the early 30s in mid July, but then slipped down again).

It's a large site with many pages on connected topics and I just can't see why it's stuck at this level on Google.  I wonder if the fact that it's a German site (albeit English language) is part of the problem.

Has anyone any ideas?

I'm feeling absolutely shattered.  I really can't remember when I last felt this tired.  I think it's a combination of a lot of emotional stress and travelling into Poole every day for radiotherapy.  Yesterday, I cycled in to Broadstone where I had three fillings at the dentist, then cycled into Poole for radiotherapy at the hospital, spent two hours walking around Poole while I left my bicycle at the bicycle shop to be serviced and have the gears adjusted, then cycled home again.

The good thing, is that all physical effort, plus thinking about the radiotherapy, has largely distracted me from the emotional stresses.  I'm exhausted by them, but I'm not currently worrying so much about them.  Let's hope that that continues.

Today, I'm going to take it pretty easy.  I'll probably potter around the allotment, taking advantage of the novelty of sunshine, do some sleeping, and maybe collapse in front of the TV set.

As far as I can tell, the radiotherapy is going well.  I've had virtually zero skin reactions, although I've been warned that it's quite common for a reaction to occur after therapy has finished.  I've been very careful to follow their instructions about not using any products on my hand including soap -- I have a jar of "aqueous cream " which is essentially a paraffin emulsion, and I've been using that to clean the skin and keep it moisturised.  The staff recommended it, and while it doesn't clean fantastically, it certainly keeps the skin soft.

My right hand feel slightly freer, although that's probably my imagination.  I finished the current session of treatment, I have to go back for another week in the middle of August.

Off to see the radiotherapist.  Fingers crossed that he's still okay about treating the hand.  This will be something new for him.

It's been a bad week.  Neck pain, toothache, too many friends in hospital and other randoms.

The NHS moves, but it moves in slow, discrete stages.

It goes something like this:

1.  Realise something is wrong with hand.  Initially, misdiagnose likely cause and have doctor agree with this diagnosis.  (Not totally doctor's fault as I added it as a question at the end of a consultation about something else)

2.  Realise that the problem was getting worse.  Speak to Douglas, who, after some research, identifies it as Dupuytren's.

3.  Back to doctor.  Asian doctor has never seen it before (Dupuytren's is very rare outside of Europeans) but calls in another doctor for a second opinion.  Second doctor refers me to a radiographer.

4.  See radiographer.  Radiographer confirms that it is Dupuytren's.  Writes letter to Doctor.

5.  BAck to doctor again.  Doctor referes me to hand specialist.

6.  See hand specialist.  Hand specialist (at last!!!) refers me to a radiographer who may be willing to discuss the possiblity of radiation therapy which is what I knew I wanted several months and many referrals ago.

7.  Don't yet know when I'll see the radiographer - it seems to take about a month for most stages in this chain (though seeing my local doctor is only a few day's wait).  Radiation therapy for Dupuytren's is not normally done in  England, though it is popular in both Germany and Canada.  People here don't seem to be aware of it.  The hand specialist had heard of it, but seemed unaware of the success rate.  Te ten-year follow-ups show that 84% of people treated had no further progression of the disease.  But you have to treat it EARLY to get this % success.  (There are side-effects - dry skin can be a long term problem.  But I'd rather be applying regular hand cream than be waiting for surgery after having my finger lose 15 degrees of movement.  That's the point they normally operate at - but surgery is not always a permanent cure and the contraction would get worse than that if untreated.)

Went to the doctor to discuss scan results. I want radiation therapy - the Dupuytren's web site makes it clear that this is the best option for the early stages of the disease (not 100% successful, but it can often stop the disease in its tracks thus avoiding the need for later surgery). ( Read more... )