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Irish Thalidomide Survivors Society

thalidomide survivors

MISSION STATEMENT
        

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The Irish Thalidomide survivors society is a non-profit and totally voluntary organisation formed to represent, assist and support Irish Thalidomider’s, and persons with other congenital disabilities attributable to the effects of other drugs, which cause tetragenic problems. The Society acts selflessly; it does not pursue its own economic purposes. 


Now, after 50 years since the introduction of thalidomide we have established social, psychological and physical suffering, left behind after this tragedy. We have decided to set up ITSS (Irish Thalidomide survivor’s society) our aim is to provide the following on a total volunteer basis:
Consultation and information gathering
The ITSS aims to advise and guide organisations and interested parties in all matters relating to the provision of care, social security, and social legislation, access, etc., as well as medical supplies and equipment with tools .
The ITSS sees itself as a gateway that focuses on all those concerned in the relevant information and provided, as it is available.
Self-help. Individual
Self-help network, consultation and information gathering, advise and guide organisations and interested parties in all matters relating to the provision of care, social security, and social legislation, access, etc., as well as advice with medical supplies, equipment and with helping tools .
Self-help network
ITSS endeavor to help those affected by Thalidomide to become experts in their own right, with their experience and expertise in this regard and present to each other support and advice. It is also our intension to provide to government agencies and independent associations regional and local a comprehensive self-help network for Thalidomide survivors.
Tools
Here we want to show reports on resources (e.g., dressing, housing assistance or rebuilt home furnishings, etc.), designed as they were by ourselves, or are commercially available.



Long term Goals
The ITSS long-term goal is to establish and maintain a self-help group. The function of the self-help group would be to coordinate treatment and counseling (Assistance in times of distress), documentation, and medical training to ensure medical care, where you feel a person with thalidomide feels they are safe and the doctors know their way around the unique medical problems of thalidomider’s. Advocacy and self-help work. Last but not least, to give personal experiences of maintaining social contacts with relatives and friends.

We want to provide the contact details of doctors and therapists; from all over Europe, willing to specialise in the particular concerns of thalidomide victims to come together with those who are already experienced with medical problems concerning Thalidomide people


The Irish Thalidomide survivors society is a non-profit and totally voluntary organisation formed to represent, assist and support Irish and Thalidomider’s, and persons with other congenital disabilities attributable to the effects of other drugs, which cause tetragenic problems. The Society will act selflessly; it will not pursue its own economic purposes. 

Now, after 50 years since the introduction of thalidomide we have established social, psychological and physical suffering, left behind after this tragedy. We have decided to set up ITSS (Irish Thalidomide survivor’s society) our aim is to provide the following on a total volunteer basis:
Consultation and information gathering
The ITSS aims to advise and guide organisations and interested parties in all matters relating to the provision of care, social security, and social legislation, access, etc., as well as medical supplies and equipment with tools .
The ITSS sees itself as a gateway that focuses on all those concerned in the relevant information and provided, as it is available.
Self-help. Individual
Self-help network, consultation and information gathering, advise and guide organisations and interested parties in all matters relating to the provision of care, social security, and social legislation, access, etc., as well as advice with medical supplies, equipment and with helping tools .
Self-help network
ITSS endeavor to help those affected by Thalidomide to become experts in their own right, with their experience and expertise in this regard and present to each other support and advice. It is also our intension to provide to government agencies and independent associations regional and local a comprehensive self-help network for Thalidomide survivors.
Tools
Here we want to show reports on resources (e.g., dressing, housing assistance or rebuilt home furnishings, etc.), designed as they were by ourselves, or are commercially available.



Long term Goals
The ITSS long-term goal is to establish and maintain a self-help group. The function of the self-help group would be to coordinate treatment and counseling (Assistance in times of distress), documentation, and medical training to ensure medical care, where you feel a person with thalidomide feels they are safe and the doctors know their way around the unique medical problems of thalidomider’s. Advocacy and self-help work. Last but not least, to give personal experiences of maintaining social contacts with relatives and friends.

We want to provide the contact details of doctors and therapists; from all over Europe, willing to specialise in the particular concerns of thalidomide victims to come together with those who are already experienced with medical problems concerning Thalidomide people


The Irish Thalidomide survivors society is a non-profit and totally voluntary organisation formed to represent, assist and support Irish and Thalidomider’s, and persons with other congenital disabilities attributable to the effects of other drugs, which cause tetragenic problems. The Society will act selflessly; it will not pursue its own economic purposes. 

Now, after 50 years since the introduction of thalidomide we have established social, psychological and physical suffering, left behind after this tragedy. We have decided to set up ITSS (Irish Thalidomide survivor’s society) our aim is to provide the following on a total volunteer basis:
Consultation and information gathering
The ITSS aims to advise and guide organisations and interested parties in all matters relating to the provision of care, social security, and social legislation, access, etc., as well as medical supplies and equipment with tools .
The ITSS sees itself as a gateway that focuses on all those concerned in the relevant information and provided, as it is available.
Self-help. Individual
Self-help network, consultation and information gathering, advise and guide organisations and interested parties in all matters relating to the provision of care, social security, and social legislation, access, etc., as well as advice with medical supplies, equipment and with helping tools .
Self-help network
ITSS endeavor to help those affected by Thalidomide to become experts in their own right, with their experience and expertise in this regard and present to each other support and advice. It is also our intension to provide to government agencies and independent associations regional and local a comprehensive self-help network for Thalidomide survivors.
Tools
Here we want to show reports on resources (e.g., dressing, housing assistance or rebuilt home furnishings, etc.), designed as they were by ourselves, or are commercially available.



Long term Goals
The ITSS long-term goal is to establish and maintain a self-help group. The function of the self-help group would be to coordinate treatment and counseling (Assistance in times of distress), documentation, and medical training to ensure medical care, where you feel a person with thalidomide feels they are safe and the doctors know their way around the unique medical problems of thalidomider’s. Advocacy and self-help work. Last but not least, to give personal experiences of maintaining social contacts with relatives and friends.

We want to provide the contact details of doctors and therapists; from all over Europe, willing to specialise in the particular concerns of thalidomide victims to come together with those who are already experienced with medical problems concerning Thalidomide people


                                                                                                                                               

The ITSS aim is to advise and guide organisations and interested parties in all matters relating to the provision of care, social security,  social legislation, latest news on uses of tetragenic drugs , medical supplies and equipment with helping tools .etc

The ITSS sees itself as a gateway that focuses on all those concerned in the relevant information and provided, as it is available.

The ITSS aims to advise and guide organisations and interested parties in all matters relating to the provision of care, social security, and social legislation, access, etc., as well as medical supplies and equipment with tools .
The ITSS sees itself as a gateway that focuses on all those concerned in the relevant information and provided, as it is available.
The ITSS aims to advise and guide organisations and interested parties in all matters relating to the provision of care, social security, and social legislation, access, etc., as well as medical supplies and equipment with tools .
The ITSS sees itself as a gateway that focuses on all those concerned in the relevant information and provided, as it is available.

 

 THALIDOMIDE STORY                                                                                                                                                                                                                   

 

Past

Thalidomide was  developed by German pharmaceutical company Grünenthal in Stolberg (Rhineland) near Aachen , although this claim has recently been challenged. A report published by Dr Martin W Johnson, director of the Thalidomide Trust in the United Kingdom, detailed evidence that suggested the drug had been developed as an antidote to nerve gases such as sarin in Germany in 1944, ten years before Grünenthal secured a patent in 1954. Other sources have suggested that it may have been first synthesised by British scientists at the University of Nottingham in 1949. 1954: Two employees of the company, "Chemie Grünenthal" in Stolberg near Aachen,made it possible to manufacture the drug thalidomide, as a calming and sleep aid.Thalidomide, launched by Grünenthal on 1st October 1957, was found to act as an effective tranquiliser and painkiller and was proclaimed a "wonder drug" for insomnia, coughs, colds and headaches. It was also found to be an effective antiemetic which had an inhibitory effect on morning sickness , and so thousands of pregnant women took the drug to relieve their symptoms. At the time of the drug's development it was not thought likely that any drug could pass from the mother across the placental barrier and harm the developing fetus .

Thalidomide was a drug, which after years of extensive animal tests, was first marketed as an over-the-counter sedative. before being marketed, the danger signs had already appeared: during the 1950s at the University Clinic at Bonn, Thalidomide had been tested on 140 children. Doses used were 11 to 20 times higher than the recommended dose for adults. Half the children were mentally disturbed or had brain damage and had been given the drug for up to nine weeks. The parents were not asked for their permission, nor were they informed that their children were being treated with an entirely new sedative.

Sales rocketed and many pharmaceutical companies produced the drug under license to Chemie Grünenthal from as early as 1955 and 1957.

1957, after launching Contergan (Thalidomide) in West Germany, reports began to appear regarding peripheral neuritis which revealed thalidomide's toxic effects on the nervous system of the user. The same problems were confirmed by doctors who reported ill- effects from the drug, while observing their patients. followed by a surge of universal medical agreement that severe nervous damage was being caused by Thalidomide. During this time, of the marketing and sale of the drugs containing Thalidomide in Ireland, the Irish Government, under the auspices of its Department of Health, approved the marketing and sale of Softenon, Entero-Sediv, Poli-Gripan, Nocto-Sediv, Predni-Sediv. Despite the surge of universal medical agreement, that severe nervous damage was being caused by Thalidomide.

Such a suspicion was suggestive enough to cause Dr Frances Kelsey, the Medical Officer of the American Food and Drug Administration, to reject the pharmaceutical company's application to market Kevadon (Thalidomide) in the United States, because among other reasons, she was not satisfied that the drug would be safe to take during pregnancy. In 1962, the United States Congress enacted laws requiring tests for safety during pregnancy before a drug can receive approval for sale in the U.S. Some other countries enacted similar legislation, and thalidomide was not prescribed or sold for decades. 

Nevertheless, the drug went on to cause an outbreak of physical deformities in tens of thousands of children across the world. Many of these did not survive early childhood, and countless more had already died in the uterus.

Correspondence from Dr. Victoria Coffey’s sent on the 23rd March 1963 by to the Department of Health and subsequently on October 12th 1964 to Prof. Lenz, Germany). Stated, “The number of babies in Ireland with limb anomalies considered attributable to the drug Thalidomide was 105.  Of these, 87 were actually born alive but 23 died in the neonatal period.  The remainder of 64 had malformations of varying severity”. We now no there is 27 

Irish thalidomide beneficiaries recognised by the Irish and German authorities. this is officially recorded in 2009. However, it is claimed that there are 32.

The US presidential candidate Mr. Ralph Nader claimed in 1973 that The Irish Times had withheld an article on the problems associated with thalidomide at a time when the drug was presumed to be safe, according to files in the National Archives.

However, it was withdrawn in the early November 1961 when it was discovered that it was causing severe deformities in babies. 

Mr Nader claimed that the Government knew that the drug was dangerous in 1961 yet waited almost seven months - until June 1962 - before telling the public that the drug had been removed from sale and was dangerous.

 It was also disclosed at the trial by Dr Muckter, the director of the scientific laboratory of Chemie Grünenthal, that all the company's records were destroyed - or had 'disappeared' during 1959....Because Chemie Grünenthal had performed the required animal safety-tests, and because these did not show evidence of any danger, the manufacturers of Thalidomide were found not guilty by the court of consciously marketing a harmful drug.

PRESENT SITUATION IN IRELAND

In 1975 after a decade of intense lobbying by our parents a commitment was entered into by the Irish Government to provide compensation to us and provide essential services and facilities. 

One of the key points of the said agreement was that the above objectives would meet pace over time with increasing money values and cater for the increasing essential services and aids necessitated by our disabilities.

Thirty-five years on, we assert that the treatment we now receive is inadequate to keep the spirit of the aforementioned agreement. we have had degrading disputes with various public authorities, regarding our health and services, induced by the lack of an inadequate and unfair financial compensation package We feel that the commitment embodied in the agreement has been made in recognition of our unique situation as Thalidomide survivors.Some of the basic normal activities that were once possible now cause aggressive pain and inability to carry out these tasks.

The current level of support we receive does not address our ever-increasing need for more facilities particularly given the infirmities that old age now brings on top of our already significant disabilities.

 Thalidomide was  developed by German pharmaceutical company Grünenthal in Stolberg (Rhineland) near Aachen , although this claim has recently been challenged. A report published by Dr Martin W Johnson, director of the Thalidomide Trust in the United Kingdom, detailed evidence that suggested the drug had been developed as an antidote to nerve gases such as sarin in Germany in 1944, ten years before Grünenthal secured a patent in 1954. Other sources have suggested that it may have been first synthesised by British scientists at the University of Nottingham in 1949. 1954: Two employees of the company, "Chemie Grünenthal" in Stolberg near Aachen,made it possible to manufacture the drug thalidomide, as a calming and sleep aid.Thalidomide, launched by Grünenthal on 1st October 1957, was found to act as an effective tranquiliser and painkiller and was proclaimed a "wonder drug" for insomnia, coughs, colds and headaches. It was also found to be an effective antiemetic which had an inhibitory effect on morning sickness , and so thousands of pregnant women took the drug to relieve their symptoms. At the time of the drug's development it was not thought likely that any drug could pass from the mother across the placental barrier and harm the developing fetus .

 Thalidomide was a drug, which after years of extensive animal tests, was first marketed as an over-the-counter sedative. before being marketed, the danger signs had already appeared: during the 1950s at the University Clinic at Bonn, Thalidomide had been tested on 140 children. Doses used were 11 to 20 times higher than the recommended dose for adults. Half the children were mentally disturbed or had brain damage and had been given the drug for up to nine weeks. The parents were not asked for their permission, nor were they informed that their children were being treated with an entirely new sedative.

 Sales rocketed and many pharmaceutical companies produced the drug under license to Chemie Grünenthal from as early as 1955 and 1957.

1957, after launching Contergan (Thalidomide) in West Germany, reports began to appear regarding peripheral neuritis which revealed thalidomide's toxic effects on the nervous system of the user. The same problems were confirmed by doctors who reported ill- effects from the drug, while observing their patients. followed by a surge of universal medical agreement that severe nervous damage was being caused by Thalidomide. During this time, of the marketing and sale of the drugs containing Thalidomide in Ireland, the Irish Government, under the auspices of its Department of Health, approved the marketing and sale of Softenon, Entero-Sediv, Poli-Gripan, Nocto-Sediv, Predni-Sediv. Despite the surge of universal medical agreement, that severe nervous damage was being caused by Thalidomide. 

 Such a suspicion was suggestive enough to cause Dr Frances Kelsey, the Medical Officer of the American Food and Drug Administration, to reject the pharmaceutical company's application to market Kevadon (Thalidomide) in the United States, because among other reasons, she was not satisfied that the drug would be safe to take during pregnancy. In 1962, the United States Congress enacted laws requiring tests for safety during pregnancy before a drug can receive approval for sale in the U.S. Some other countries enacted similar legislation, and thalidomide was not prescribed or sold for decades.

 Nevertheless, the drug went on to cause an outbreak of physical deformities in tens of thousands of children across the world. Many of these did not survive early childhood, and countless more had already died in the uterus.

 Correspondence from Dr. Victoria Coffey’s sent on the 23rd March 1963 by to the Department of Health and subsequently on October 12th 1964 to Prof. Lenz, Germany). Stated, “The number of babies in Ireland with limb anomalies considered attributable to the drug Thalidomide was 105.  Of these, 87 were actually born alive but 23 died in the neonatal period.  The remainder of 64 had malformations of varying severity”.

We now no there is 27 Irish thalidomiders on the German  records and 32 on the Irish records with damage attributable to the drug Thalidomide.


Thalidomide was a drug, which after years of extensive animal tests, was first marketed as an over-the-counter sedative. before being marketed, the danger signs had already appeared: during the 1950s at the University Clinic at Bonn, Thalidomide had been tested on 140 children. Doses used were 11 to 20 times higher than the recommended dose for adults. Half the children were mentally disturbed or had brain damage and had been given the drug for up to nine weeks. The parents were not asked for their permission, nor were they informed that their children were being treated with an entirely new sedative.

Sales rocketed and many pharmaceutical companies produced the drug under license to Chemie Grünenthal from as early as 1955 and 1957.

1957, after launching Contergan (Thalidomide) in West Germany, reports began to appear regarding peripheral neuritis which revealed thalidomide's toxic effects on the nervous system of the user. The same problems were confirmed by doctors who reported ill- effects from the drug, while observing their patients. followed by a surge of universal medical agreement that severe nervous damage was being caused by Thalidomide. During this time, of the marketing and sale of the drugs containing Thalidomide in Ireland, the Irish Government, under the auspices of its Department of Health, approved the marketing and sale of Softenon, Entero-Sediv, Poli-Gripan, Nocto-Sediv, Predni-Sediv. Despite the surge of universal medical agreement, that severe nervous damage was being caused by Thalidomide.

Such a suspicion was suggestive enough to cause Dr Frances Kelsey, the Medical Officer of the American Food and Drug Administration, to reject the pharmaceutical company's application to market Kevadon (Thalidomide) in the United States, because among other reasons, she was not satisfied that the drug would be safe to take during pregnancy. In 1962, the United States Congress enacted laws requiring tests for safety during pregnancy before a drug can receive approval for sale in the U.S. Some other countries enacted similar legislation, and thalidomide was not prescribed or sold for decades. 

Nevertheless, the drug went on to cause an outbreak of physical deformities in tens of thousands of children across the world. Many of these did not survive early childhood, and countless more had already died in the uterus.

Correspondence from Dr. Victoria Coffey’s sent on the 23rd March 1963 by to the Department of Health and subsequently on October 12th 1964 to Prof. Lenz, Germany). Stated, “The number of babies in Ireland with limb anomalies considered attributable to the drug Thalidomide was 105.  Of these, 87 were actually born alive but 23 died in the neonatal period.  The remainder of 64 had malformations of varying severity”. We now no there is 27 

Irish thalidomide beneficiaries recognised by the Irish and German authorities. this is officially recorded in 2009. However, it is claimed that there are 32.

The US presidential candidate Mr. Ralph Nader claimed in 1973 that The Irish Times had withheld an article on the problems associated with thalidomide at a time when the drug was presumed to be safe, according to files in the National Archives.

However, it was withdrawn in the early November 1961 when it was discovered that it was causing severe deformities in babies. 

Mr Nader claimed that the Government knew that the drug was dangerous in 1961 yet waited almost seven months - until June 1962 - before telling the public that the drug had been removed from sale and was dangerous.

 It was also disclosed at the trial by Dr Muckter, the director of the scientific laboratory of Chemie Grünenthal, that all the company's records were destroyed - or had 'disappeared' during 1959....Because Chemie Grünenthal had performed the required animal safety-tests, and because these did not show evidence of any danger, the manufacturers of Thalidomide were found not guilty by the court of consciously marketing a harmful drug.

PRESENT SITUATION IN IRELAND

In 1975 after a decade of intense lobbying by our parents a commitment was entered into by the Irish Government to provide compensation to us and provide essential services and facilities. 

One of the key points of the said agreement was that the above objectives would meet pace over time with increasing money values and cater for the increasing essential services and aids necessitated by our disabilities.

Thirty-five years on, we assert that the treatment we now receive is inadequate to keep the spirit of the aforementioned agreement. we have had degrading disputes with various public authorities, regarding our health and services, induced by the lack of an inadequate and unfair financial compensation package We feel that the commitment embodied in the agreement has been made in recognition of our unique situation as Thalidomide survivors.Some of the basic normal activities that were once possible now cause aggressive pain and inability to carry out these tasks.

The current level of support we receive does not address our ever-increasing need for more facilities particularly given the infirmities that old age now brings on top of our already significant disabilities.

 

 


 

 

 My name is Carmel Daly McDonnell I represent the, The Irish Thalidomide survivors society. We are a non-profit organisation representing Irish thalidomider’s. Our aim is to advice and guide agencies in all matters relating to thalidomide survivors and drugs containing thalidomide properties. This is outline the complicated difficulties we are having with Minister James Reilly and in the conclusion give a brief insight on the impact thalidomide has had on our lives .


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EU talks in campaign for drug settlement

Published on the

08 January

2014

00:01

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A THALIDOMIDE victim from Yorkshire is to hold talks with the EU Health Commissioner as he steps up his fight for justice against the German pharmaceutical company which developed the anti-morning sickness drug.

 

Guy Tweedy and four colleagues – who are representing the UK’s 469 remaining Thalidomiders – have secured a meeting on Friday with Antonio Borges, in the hope of brokering a compensation talks with Grunenthal and the German government.

 

The meeting comes after a concerted lobbying campaign of UK MEPs by leading Thalidomide victims, who aim to secure a financial settlement from Grunenthal for UK, Swedish, Canadian and Australian victims of the “wonder drug”.

 

Mr Tweedy, 51, a businessman from Harrogate, said: “Over the last few months we have had a series of meetings with UK MEPs and, thanks to their support of our campaign, we now have a face to face meeting with Mr Borges.

 

“We hope we will be able to persuade him to use his influence to mediate a solution that will lead to us sitting down with representatives of both Grunenthal and the German government, and, ultimately, receiving compensation for the lasting damage their drug has done.”

 

Mr Tweedy, who was born with shortened arms and fingers fused together, added: “In 1971, the German government passed a law protecting Grunenthal from anyone taking legal action against it in relation to Thalidomide.

 

“However, the company needs to own up to its responsibilities and help those who have been living with the side effects of 
Thalidomide for more than 50 years.”

 

Thalidomide was administered to pregnant women to combat the effects of morning sickness, however, in May 1962 the drug was withdrawn after it was linked to crippling side effects in new-born babies.

 

At least 2,000 babies in the UK were born with deformities brought about directly by Thalidomide, and more than half
of them died within their first 
year.


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