watervole: (Default)
 I'm a trustee of the British Dupuytren's Society, and we're being asked to provide input towards an evaluation by NICE of collagenase.

NICE are incredibly careful to ensure equality and avoid discrimination and have invited patient groups for Africans and South Asians and the like. 6 out of the 8 patient groups invited are for ethnic/religious minorities.

Ironically, this actually stacks the deck rather badly as Dupuytren's is almost unknown among black and Asian people.  It's a disease of northern European white men (and Japanese) and is heavily skewed towards whites, men and the elderly...  (Not a disease of the rich, all sorts of people get it)

There's a strong genetic component - we have no idea why.  (One presumes that some factor relating to the disease may be of advantage to Northerners, or it would not be so widespead)  The odds are very high indeed that you will personally know at least one person with Dupuytren's - but you probably won't know they have it unless their fingers are really badly bent.  (I can spot it very early on, but I've developed an eye for it over time)  If you live in Scotland, the odds are even higher.

We've suggested that NICE add Age UK and a men's health group to their list of groups being consulted.  (I'm not sure that there are any advocacy groups for Northern Europeans)
watervole: (shoddy research)
 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.

watervole: (Default)
I'm looking for people willing to share their experience of Dupuytren's or of caring for someone with Dupuytren's.

If this is you (especially if you live in Scotland) then please get in touch. The data is needed (and will be made anonymous) for a submission document to the SMC with relation to a new treatment for Dupuytren's hopefully being made available in Scotland. We aren't after complex medical details, we want to know about the effect on daily life. eg. Difficulty in using a knife and fork.

Contact Judith@dupuytrens-society.org.uk

Scottish Medicines Consortium Public Involvement
watervole: (Default)
 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/

watervole: (Default)
Many of you will know someone with one or more bent fingers.  It's a condition that a lot of older people suffer from.  In most cases, the bent fingers are caused by a condition called Dupuytren's Contracture.

In most cases, probably the majority, people don't realise early on what they have, and in many cases don't seek treatment until the finger is really badly bent and they're unable to use it.  It develops slowly and I suspect many think it an inevitable condition of old age.

I've been asked if I'll help set up a charity to promote research and better knowledge of the most effective existing treatments.  The UK is still pretty much in the Dark Ages when it comes to Dupuytren's.  Both Germany and France are way ahead of us.  (Germany had radiotherapy 25 years ago and France has a big lead in breaking cords with the aid of needles rather than surgery - known as 'NA')

Does anyone have any experience of setting up a charity?  Are there problems/pitfalls I should look out for?

I don't want to get too heavily involved until the tennis elbow clears up, but I do believe that this is a medical condition that has better (and more cost-effective options) than are currently available in most of this country.
watervole: (Dupuytran's)
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.)

watervole: (Default)
I'd really appreciate it if you could look at the four websites below and give me your feelings regarding them.  The Dupuytren Society are looking to redo their website and have had various recommendations made to them.  I'd like people's reactions to some sites that have been used as comparisons.  We need a rather larger sample of reactions than we currently have.

British Heart Foundation


Dupuytren Foundation

Diabetes UK

Dupuytren Society

Please imagine that you are interested in heart disease/diabetes/Dupuytren's as patient/friend of a patient/doctor

What is your reaction to each of these sites?

Do you feel they are likely to have useful information?

Is it easy to find the information?

Does the site look interesting?

Does the site look professional?

Does the site make you want to carry on reading?

Does the site feel trustworthy?

What are the good and bad things about each site from your personal viewpoint?

It would help if you would say with your comments whether you consider yourself an academic or not (I have a feeling - and I don't know if it's right or wrong - that this may affect the kind of site that you prefer.)


watervole: (Dupuytran's)
My thanks to [livejournal.com profile] 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.

watervole: (Dupuytran's)
It's now ten months since I had the radiotherapy.  My hands look exactly the same.

This is good.  The condition has not progressed; I've not lost any more flexion in my fingers.  The lumps haven't vanished, but then I wasn't particularly expecting them to.  (In some cases, the disease is reversed, but it's not that common)

I've had no side effects at all, not even dry skin.  (I don't know if religious use of moisturiser during the treatment helped with regard to this - I followed the instructions the radiotherapy team gave me to the letter).

I've been getting a number of queries from people asking how I've done since the radiation therapy, so I'm starting a new LJ community, [profile] dupuytrens_uk for people to talk about what is available in different parts of the country.

On other fronts, my mother is considering getting treatment, but at her age, she may not need to.  Late onset Dupuytren's does not always progress very far and she's pretty elderly now.   Radiotherapy would be possible at the stage she is at, and she's glad that there is an alternative to surgery if she wants it - she's had too much surgery for other conditions and would not want to go through all that again.
watervole: (Dupuytran's)
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.

 
watervole: (Dupuytran's)
Some very interesting and helpful comments from people yesterday.

It was the relatively high rank in Australia that gave me several clues.

There's been a lot of discussion on the site's forum about the experiences of people in Australia with Dupuytren's.  I'm guessing that accounts for Australia giving us a higher ranking than nearly any other country.

Following up from that thought, I wondered what other countries are specifically mentioned on the site.  A couple of Canadian clinics are mentioned by name.  Sure enough, the ranking on Google Canada is relatively high (I think it was 17) compared to the UK.

There's a lot of variation between countries and it looks as though it partly relates to geographical proximity (such as the Netherlands) and partly due to specific mentions of a country by name such as Canada and Australia.

I guess this theory can be easily tested, as when my treatment is complete (end of next week), I'll be asking my doctor at the hospital if the site can list his details for other people in the UK to contact him.  If I'm right, then this should raise the site's ranking on Google UK.
watervole: (Eye of Horus)
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?

Google Fu

Jul. 8th, 2007 10:16 pm
watervole: (Huh?)
I need help from someone who understands Google better than I do.

If I search for  -  link:dupuytren-online.info - then I get three results.  ie.  There are three sites that link to - dupuytren-online.info

However, if I search for  - dupuytren-online.info - then I get 294 results such as this page http://www.seniorsresourceguide.com/National/Dupuytrens/index.html (the link is at the bottom and is in the exact form that I searched for as a link)

If I change my search to  'dupuytren society', then I get a whole new batch of links, such as this one: http://www.bbc.co.uk/health/conditions/dupuytrens1.shtml   Although the link from this site says 'dupuytren society' it is another link to dupuytren-online.info

Why are none of these results showing up when I search for links to the site?

Is this likely to have any connection with the fact that you're on the third page of Google results before dupuytren-online.info shows up in the search for 'Dupuytren'?

As it's by far the most informative and well-researched Dupuytren's site on the web, I'm trying to figure out why it shows up so low on Google, and how this situation can be improved.

Shattered

Jul. 7th, 2007 08:11 am
watervole: (Warrior)
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.
watervole: (Dupuytran's)
Waited an hour to see the radiotherapist as he was at a meeting.  I've now got lines inked all over my hands and two tiny tattoo spots on each so they can line the mask up the same for each radiotherapy session.

I've got a session each day next week, but only know the time for the first session so far.  Then there will be five follow-up sessions sometime in late August.  There's a reason I didn't book any summer holiday this year - I knew I'd need to leave space for treatment if I got it.

It's a bit scary.  I've fought hard to get this treatment (I don't know any other cases of someone in the UK getting radiation therapy for Dupuytren's), but now, it's in the lap of the Gods.  There's a good chance that it will halt the onset of the disease, or at least delay it by five to ten years, but it's not guaranteed.  Nothing that I do now will make any difference to the outcome.  (apart from the obvious one of turning up for my appointments)
watervole: (Dupuytran's)
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.
watervole: (Dupuytran's)
Went to see a radiotherapist today.  My persistance with various doctors has finally paid off.  He looked at the material I'd brought with me and said that although he'd never come across Dupuytren's being treated by radiation therapy before, the German data looked good and he'd treat me.  I should get the appointments (I have to go in for five days on the trot) in two to three weeks time.]

HE said that radiation therapy is used for some other conditions that are benign (ie. non-cancerous).  I think he mentioned Plantar fibromatosis on the feet (or something that sounded a bit like that).  I asked him if he meant Ledderhose disease,  but he'd never heard of that.  Actually (confirming my thoughts with Google) the two are one and the same thing.

Ledderhose is the version of Dupytren's that occurs on the feet.  It tends to run far more to nodules (which are the starting point on the hand) and only rarely goes into contracture.

However, if he is used to treating the related condition, that's a good sign.  But how come he didn't even know they were related?  (there's a genetic link in the inheritance patterns)  It's as though you have to suffer from something yourself to have the incentive to read around it.  I guess teaching tends to run in patterns and as you were taught, so you teach.  Every country seems to have its favoured methods for treating Dupuytren's.  I came across a new article today mentioning the accidental discovery that skin grafts stop it spreading.  There's also some work involving topical steroid creams.
watervole: (Dupuytran's)
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.)
watervole: (Dupuytran's)
Just got an email from a guy in Richmond (via a site that [livejournal.com profile] vjezkova mentioned) who says he persuaded someone locally to treat his hand after he obtained a batch of research results from Germany.

If I can't get anyone locally, then Richmond sounds cheaper than Germany... (You have to stay around for a while as it's a short treatment on several successive days and you may have to go back for more than one treatment session after a few months)

He says it's making a small improvement - but, like me, his main aim is to prevent it getting worse. He reports that he's getting dry skin, but that's a known side-effect and has to be an improvement on not being able to extend your fingers... (Imagine not being able to play a musical instrument)

If anyone feels at a loose end, I could use a general natter over the phone.

Added later. I just checked up on the hospital he mentioned. Assumptions are dangerous things - he's in Richmond, Virginia...
watervole: (Toothache)
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... )
watervole: (Thoughtful)
Today confirmed what I'd been pretty convinced of for the last month or two.

I originally thought the pain in my palm was caused by too much typing, but [livejournal.com profile] dougs said it was almost certainly Dupuytren's Contracture and when I looked at the web site http://www.dupuytren-online.info/morbus_dupuytren.html I was inclined to agree. The symptoms matched too well.

I went to see the doctor who was insistant that it could equally well be a cyst, but in the six weeks until today's ultrasound appointment, the symptoms were becoming more developed.

BAck to the doctor's next week. If the web sites I've looked at are correct then there are forms of treatment that are only effective in the early stages. Later stages require surgery and the effects aren't always permanent.

I've go a suspicion that it's starting on my other hand as well. There's a sore spot in exactly the wrong place... My hypermobility tends to mask some of the effects. (I can bend my fingers further than most people, hence the normal symptom of being unable to straighten out the fingers doesn't show until the lumps are further progressed)

Profile

watervole: (Default)
Judith Proctor

Syndicate

RSS Atom

Tags

Style Credit

Expand Cut Tags

No cut tags
Page generated Aug. 19th, 2017 12:51 pm
Powered by Dreamwidth Studios