Trudy Lapinskis is the most inspirational woman I have ever met, she has suffered from the most unimaginable painful and horrific illness which left her looking physically grotesque and never complains.
Her main concern is to raise awareness so others do not suffer the same way. Which is why she has organised the first conference into Reflex Sympathetic Dystrophy. being held in London next month. I shall be only too proud to help her publicise this.
We were talking about a true life story she had read in Chat magazine and I suggested she send them a pic of her shocking elephantitis leg and ask them if it was the worst picture they had ever seen.
Sure enough they jumped at the chance to tell everyone her tragic story, 
about how she knocked her back while at work, and from that developed this cruel neurological syndrome which has since spread to her other leg and hands too. She is believed to have the worst case in the country.
Trudy is on their front cover with the heading “Yucky Picture Warning” and a whole page is devoted to her unbelievable story. Even though I don’t believe in cheque book journalism, Trudy was paid a small sum which will go towards her conference costs. Chat have asked for more shocking pics and will pay £1,000 if anyone can beat it – I somehow doubt it.
Update: Please note this conference is aimed specically at the medical profession to raise their awareness and international speakers will be attending.
Publicity wise, Trudy seems to be in good hands.
I truly hope the conference is a success.
What amazing courage.
It is appalling, as you said in April, Ellee, that with our advanced knowledge of medicine in the UK, anyone should be suffering like this. Perhaps if we spent less on war and destruction?? I agree that Trudy shows amazing courage and I wish her well.
What can i say?… ” I used to complain about my shoes, until i met a man without feet”.
I have a blood disorder which keeps me “busy”. But when i read this I am grateful for who and where I am.
How horrifying! I agree…you wou think that in this modern day there would be something that could be done. What a brave woman indeed!
tea
xo
I know Trudy will be really touched by your supportive comments. I believe she is in King’s College Hospital, London at the moment, I hope to speak to her next week. It really is impossible to believe that in this day and age, with all our medical knowledge, that such deforming injuries can occur.
Hi
Firstly Please note this is NOT the FIRST RSD Conference there has been 10 that I know of, and that does not include the the ones I havent had the opportunities to attend.
I have also read that “Trudy is the worst in the UK”. How can someone write that when it is incorrect!.
UK has a Recognised RSD Charity – the only one in the UK. Also has leaflets, and a book was published with a leading Consultant.
Yes I do know Trudy, I also know HUNDREDS of RSD/ CRPS sufferers here in the uk, and hundreds around the world. And I am also a sufferer.
Please NOTE RSD afects people differently. Not all cases spread, and lots go in to remission. Please no scare stories.
For more information on the RSd_UK Charity, the previous Conferences, the work that has been achieved, and so you can see, what is FACT and not fiction (and Trudy is aware of the conferences as she has been invited to them)
http://www.rsd-crps.co.uk
Sharon, Trudy’s consultant Dr Hester told me herself that Trudy’s case was the worst known case in the country, she is president of the British Pain Society which is supporting Trudy’s 1st International Conference on CRP syndrome for healthcare professionals. She has persuaded professionals from all over the world to attend in the hope of raising awareness helamong the medical profession. Here is the link:
http://www.britishpainsociety.org/meet_other_meetings.htm
Of course it affects people in different ways. I’m sorry to hear that you are also a sufferer, I’m sure you would like this major event to be a success, so those in the medical profession can recognise the symptoms and treat it as early as possible to prevent it worsening.
Trudy’s consultant was confident this was the first major conference of this kind ever to be held. It is being staged at the Central Westminster Methodist Hall, London on December 5th. Trudy has organised the fund-raising, catering, all the admin, it has been a massive undertaking for her while being in constant pain.
Sharon, Just for further clarification, Trudy has never told me herself she has the worst case – it came from her consultant, obviously as a result of what happened to her leg, which is truly monstrous and unbelievable.
Perhaps I should also have emphasised that this is the first medical based international conference of its kind in the UK on this subject, it is aimed at the medical profession to raise their awareness, such as GPs, rather than sufferers.
Hi
I agree what happened to her leg is horrendous, but the statment has caused a lot of upset and perhaps anger amongst RSD sufferers. How do you decide who is the worse person?, is there a register of all RSD Sufferers ? as this Dr hasn’t seen all every one in the UK, does it list their symptoms, where their RSD is?, how they cope?,
who can say someone in a wheelchair is worse off then someone who can’t use their hand and get dressed, or wash themselves?
Or one amputee is worse then another who has had two limbs amputated.
Or even other patients who have not just got RSD in 1, 2 3 or even RSD in all 4 limbs: both legs ( wheelchair users) both hands and arms, but also rsd in their trunk, chest and not forgetting internal organs ( cardiac & breathing problems etc), including bladder, bowels and have incontinence etc, womb etc, not forgetting rsd in face, jaw, and also the ones who have all those problems and also have rsd in their stomach, and also can’t eat solid foods but can only eat liquid? – surley their RSD thoughout their body would be classed as the worse?
Surely at the end of the day RSD is RSD and everyones quality of life is affected one way or another. To have a label of being the worse in the country is wrong.
We are all equal, we are all sufferers, we are all in pain, but we are all FIGHTERS and we all should be treated the same and not labelled as being the worse, or not too bad, RSD is bad to each individual no matter where the location, and whether they have it in just one limb or in all limbs or full bodied”.
Every RSDer is Equal no matter where they have it 🙂
Sharon, I fully understand the point you have made and I am sorry you have taken it this way, it was never meant to undermine the terrible suffering of others, but to highlight the extremes it can reach if not diagnosed early enough and treated correctly. Please try and focus on the good work that Trudy is doing to promote the suffering of every RSD sufferer, to raise awareness among the medical profession.
Trudy is now out of hospital and wants to pass on her sincerest thanks to everyone for their kind words and thoughts.
OK, I also have RSD/CRPS, – whatever you want to call the stupid condition.
It has already been pointed out that there have been atleast 8 national conferences in UK, – the lastone that I know of in York last year and anotherone to follow next year, – all, to the best of my knowledge, have been contributed to greatly by Prof Blake (top doc for RSD), of Royal National Hospital for Rhumatic Diseases in Bath, which is the only hospital in UK to specialise in the condition, and works alongside a major hospital in London.
Trudy has been invited to join RSDUK many times by many fellow sufferers, including myself, however, no one ever gets a reply from her.
In my opinion, raising awareness can only be a good thing, HOWEVER it is unethical for people to make false claims, like first ever conference or worst ever case, etc (doctor, patient, whoever, quite frankly I don’t care who says it, it’s still wrong) and those making such claims chould investigate what is actually being done to raise awareness BEFORE making such claims.
Surely it’ll be easier, better and more effective for many RSDers to work together, as opose to individually top raise such awareness.
Please visit http://www.rsd-crps.co.uk and even the support forum (almost 1000 members, all with RSD or carers of someone with RSD) http://www.rsd-crps.co.uk/phpBB2 – find out what’s really going on. The above is the website forthe national charity RSDUK, in conjunction with the hospital at Bath, – doctors treating RSD use the website for information also.
Dear,
Sirs/Madams, & Trudy Lapinskis, I’d be greatful if you’d also take a look at this page from RSD-UK: http://rsd-crps.co.uk/phpBB2/viewtopic.php?p=26854&highlight=#26854
I’d also like to know where I could find the minutes for the 1st International Conference on Complex Regional Pain Syndrome for Healthcare Professionals that was held on: Tuesday 5th December 2006 At:
Central Methodist Hall,
Westminster,
London,
SW1H,9NH,
http://www.britishpainsociety.org/meet_other_meetings.htm
Yours Sincerely,
Mr. Scott Aron John Reynolds http://groups.msn.com/PalmarMidcarpalInstabilityPMCIRSD