That every Government takes immediate action to inform their Medical Professionals of the existence of Reflex Sympathetic Dystrophy/Complex Regional pain Syndrome the Worlds most Painful Incurable Condition, of how it’s sufferers must be handled and the treatments that must never be used by the simple means of sending one e-mail to every medical school and facility in the country. This can be done by sending one-e-mail to every medical facility in the country which would costs virtually nothing so there can be no excuse for failing to do so.
To hold urgent meetings to discuss financing the training of all doctors, therapists and nurses in the diagnosing and handling of sufferers. To finance newly qualified doctors to receive specialist training until there is one specialist in every hospital in the country.
To commit to paying the equivalent of £1,000,000 annually to an International Research and Study Fund.
To the UN to pass a Resolution committing its members to do this and to back the
Worldwide Awareness Campaign
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People and sites from around the world are coming together to turn November 2013 into International RSD Awareness Month, currently only <?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-com:office:smarttags" />America has a National Awareness Month.
Please spare 5 1/2 mins to watch this video but be aware you may find some of the images disturbing.
http://www.youtube.com/watch?v=MviVcjWZDts
it is vital that you watch it to the end
If you are newly diagnosed I strongly suggest you do not watch it.
If you live in the UK please sign http://epetitions.direct.gov.uk/petitions/31344
E-mail the link to your MP asking why since being informed on 30/10/2010 David Cameron, Nick Clegg and The DOH have refused to do anything about the situation
No matter where you live in the world can you please sign here http://www.pledgebank.com/RSDCRPS
If you live in another Country can you start your own petition and send the link to your own Politicians
If you are willing to commit to spending 15mins a day for 4 weeks then 15mins a week to help spread this then please e-mail me on.
[email protected] or join me on facebook
Kevin
That the World Health Organisation arranges to administer the fund and sets up a voluntary unpaid committee consisting of 1 Member of the World Health Organisation, 5 specialists and 5 long term sufferers, ( min 5 years) none from the same country to evaluate funding requests from Doctors around the world for studies into a cure for this condition. All requests to be submitted by 1st Oct in English and in terms that a non-medical person can understand with full funding requirements. All members will mark them in order of preference by 1st December and funding to be given to the highest recommended down until all monies have been spent.
Based on US/UK figures there are 10,s if not 100,s of millions of un/misdiagnosed sufferers through out the world living in more pain than you can possibly imagine, they like us who have finally been diagnosed many after 10 - 15 years and in one case 27years will be told that they are malingers or it's all in their heads some will attempt and even succeed in self-amputation in a desperate attempt to escape the unending pain. According to an address to one American student body we are 900% more likely to commit suicide than any other group and another American source has stated that in the long run 25% of will. I have tried as have others I have been in touch with.
Worldwide there have been 36435 Trials to find a cure for cancer for RSD/CRPS that number is 94. Only with your help can we force Governments to find the un/misdiagnosed
27 Comments
I am newly diagnosed and having a very hard time finding appropriate care because the medical community does not know enough to be helpful. I am 46, what is my future without the care that I need?
The pain is unbelievable, sometimes the doctors really do not understand. You talk to them until you are blue in the face.
Please there is no cure for this, Please make it necessary at for medical professionals to have enough awareness not to cause us more harm by not using inappropriate treatments & to know enough to get us relief.
I've heard to many doctors say they never had or seen a patient with RSDS/CRPS before me.
My son suffers with this horrible disease and there needs to be more information for doctors to help and understand RSD/CRPS
May we all get the help we need
I have Rsd/Crps and it's very important to me.
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That every Government takes immediate action to inform their Medical Professionals of the existence of Reflex Sympathetic Dystrophy/Complex Regional pain Syndrome the Worlds most Painful Incurable Condition, of how it’s sufferers must be handled and the treatments that must never be used by the simple means of sending one e-mail to every medical school and facility in the country. This can be done by sending one-e-mail to every medical facility in the country which would costs virtually nothing so there can be no excuse for failing to do so.
To hold urgent meetings to discuss financing the training of all doctors, therapists and nurses in the diagnosing and handling of sufferers. To finance newly qualified doctors to receive specialist training until there is one specialist in every hospital in the country.
To commit to paying the equivalent of £1,000,000 annually to an International Research and Study Fund.
To the UN to pass a Resolution committing its members to do this and to back the
Worldwide Awareness Campaign
<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" />
People and sites from around the world are coming together to turn November 2013 into International RSD Awareness Month, currently only <?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-com:office:smarttags" />America has a National Awareness Month.
Please spare 5 1/2 mins to watch this video but be aware you may find some of the images disturbing.
http://www.youtube.com/watch?v=MviVcjWZDts
it is vital that you watch it to the end
If you are newly diagnosed I strongly suggest you do not watch it.
If you live in the UK please sign http://epetitions.direct.gov.uk/petitions/31344
E-mail the link to your MP asking why since being informed on 30/10/2010 David Cameron, Nick Clegg and The DOH have refused to do anything about the situation
No matter where you live in the world can you please sign here http://www.pledgebank.com/RSDCRPS
If you live in another Country can you start your own petition and send the link to your own Politicians
If you are willing to commit to spending 15mins a day for 4 weeks then 15mins a week to help spread this then please e-mail me on.
[email protected] or join me on facebook
Kevin
That the World Health Organisation arranges to administer the fund and sets up a voluntary unpaid committee consisting of 1 Member of the World Health Organisation, 5 specialists and 5 long term sufferers, ( min 5 years) none from the same country to evaluate funding requests from Doctors around the world for studies into a cure for this condition. All requests to be submitted by 1st Oct in English and in terms that a non-medical person can understand with full funding requirements. All members will mark them in order of preference by 1st December and funding to be given to the highest recommended down until all monies have been spent.
Based on US/UK figures there are 10,s if not 100,s of millions of un/misdiagnosed sufferers through out the world living in more pain than you can possibly imagine, they like us who have finally been diagnosed many after 10 - 15 years and in one case 27years will be told that they are malingers or it's all in their heads some will attempt and even succeed in self-amputation in a desperate attempt to escape the unending pain. According to an address to one American student body we are 900% more likely to commit suicide than any other group and another American source has stated that in the long run 25% of will. I have tried as have others I have been in touch with.
Worldwide there have been 36435 Trials to find a cure for cancer for RSD/CRPS that number is 94. Only with your help can we force Governments to find the un/misdiagnosed
27 Comments
As a person who has CRPS this is EXTREMELY important to me that this becomes as well known everywhere as say ....breast cancer etc.
I am newly diagnosed and having a very hard time finding appropriate care because the medical community does not know enough to be helpful. I am 46, what is my future without the care that I need?
The pain is unbelievable, sometimes the doctors really do not understand. You talk to them until you are blue in the face.
Please there is no cure for this, Please make it necessary at for medical professionals to have enough awareness not to cause us more harm by not using inappropriate treatments & to know enough to get us relief.
I've heard to many doctors say they never had or seen a patient with RSDS/CRPS before me.
My son suffers with this horrible disease and there needs to be more information for doctors to help and understand RSD/CRPS
May we all get the help we need
I have Rsd/Crps and it's very important to me.
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As a person who has CRPS this is EXTREMELY important to me that this becomes as well known everywhere as say ....breast cancer etc.