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But What about them?

En intressant artikel publicerad av Irish Examiner om situationen för de neurosedynskadade på Irland

BUT WHAT ABOUT THEM?
 
Terry Prone on Monday
 
For some mothers-to-be, it happens in the morning. For some, it doesn’t happen at all. For a sizeable number of pregnant women, it takes the virulent form of constant, unremitting day and night nausea and vomiting for weeks if not months on end. It’s called “morning sickness.”
 
When a new wonder-drug promised – among other benefits – to curtail the crippling nausea affecting many of them in their early months of pregnancy, it was widely welcomed. GPs loved it, because nothing makes a patient fonder of a GP than the doctor’s capacity to take away real and present misery, and there’s no misery quite as real and present as pervasive nausea.
 
When, less than a year after the introduction of the drug, one baby was born with anomalous physical distortions, it was a tragedy for their family. When several were born within months of each other, questions were asked. These babies were missing limbs. Or missing parts of limbs. Some had feet emerging from shortened legs, others had hands attached to their shoulders. These were not problems amenable to surgical correction. These were gross deviations from the norm.
 
The one common factor connecting many of the devastated young mothers now trying to cope with a challenge they had never dreamed would be presented to them was that they had been prescribed the new wonder-drug. Thalidomide. As more and more damaged babies were born, suspicion hardened to certainty, and Thalidomide was withdrawn. It didn’t have to be withdrawn in the United States, where the Federal Drugs Administration had – fortunately – delayed its introduction in a rigorous form of regulation that would protect it against criticism for many years. And it wasn’t properly withdrawn in Ireland. A standard green leaflet went out to pharmacists. The sort of circular that was issued by the Department of Health for minor recalls. Not all of the drug was removed from the shelves of pharmacies. When a doctor who hadn’t registered the import of information sent by the Department prescribed Thalidomide after it was known just how dangerous it was, there was a chance that the pharmacy to which the prescription went might actually issue the drug. At the same time, some inattentive doctors continued to dole out free sample packs of Thalidomide. More babies were born with distorted or absent limbs.
 
This wonder drug came out of the pharmaceutical research pipeline fifty years ago and its use resulted in the birth, worldwide, of some ten thousand babies with malformed limbs.
 
In Ireland, the victims of Thalidomide – parents and children alike – found a powerful champion at the time in the form of a Dublin GP turned politician, Dr. John O’Connell. John O’Connell got livid with the German producers of the pharmaceutical, Chemie Grunenthal, and even more livid with Distillers, the company in Britain which distributed it there and in Ireland. Both sought to protect shareholder value at the expense of the children involved, and they might well have got away with it had O’Connell not been such a rabidly relentless opponent. They might have got away with minimal compensation for the children, because the parents involved were not geographically close to each other, so organisation was difficult. In addition, the mothers involved were often eaten alive by guilt over having taken a drug which had dealt their baby such a blow, despite the fact that it had been prescribed for them. Marriages came under huge pressure.
 
Nobody could even guess at the life expectancy of a child damaged by Thalidomide.
The physical distortions might, for all anybody knew, be matched by some systemic
problems that would grievously shorten the child’s life. One thing was clear. Any
Thalidomide baby would need financial support. At the very simplest level, none of
these children would ever be able to go into Penneys or Dunnes Stores and have
clothes bought off the shelf for them. Every garment would have to be altered.
 
But that was just the beginning. Mobility was going to be an issue for some of the
kids. Wheelchairs and other mobility devices would be required. Education was going
to be an enormous problem. How do you teach writing to a child who has no arms?
How does that child turn the pages of a book or paint a picture in Art class?
 
It took years, but eventually, finance began to flow. The state provided some support,
and the company that had developed and marketed Thalidomide was forced to divvy
up. Irish Thalidomide victims did marginally better than some of their peers in other
European countries.
 
Every now and again, a story would surface of a child physically limited by the drug
who nonetheless could play a musical instrument or who had done particularly well in
school. But, for the most part, the families involved concentrated on making the best
of their lot, and the children learned to cope with constant stares and half-heard
comments about their visible condition. They created friendships, won their
independence, got jobs, married and had children of their own. They didn’t want to be
heroes or victims. They just wanted to be themselves. They achieved the
extraordinary: they became ordinary people with ordinary, if difficult, lives.
 
Roughly thirty five of them now live, scattered around Ireland, connected by their shared history but undefined by it. In recent years, each of them has discovered that the clever physical resourcefulness they’ve shown throughout their lives has a dire downside. The human body will take just so much of the unnatural strains posed by trying to make two limbs do the work of four, or of torturing a shortened limb into doing the function of a fully-formed arm. Each of them is now suffering severe new limitations, pain and illness. As a torturous double-whammy, what they’re going through is akin to Post-Polio syndrome.
 
They need more help. More financial help. They’ve asked the state for that help. The state, in the form of the Department of Health and the HSE, is thinking about it. Both have been thinking about it for quite a while. The problem, of course, is the context in which that thought process is happening. The state is fresh out of money, and besieged on all sides by organised protest. Protest – as we saw yesterday – by the able-bodied. Protest – as we’ve seen in recent weeks – by the passionate parents of children needing Special Needs Assistants. Thirty five people with – in some cases – grievous physical constraints can’t mount that kind of protest, and the individuals involved are reluctant to parade their injuries to evoke sympathy. They just hope the powers-that-be can find a way to help their tiny group.
 
Ireland got itself into its current economic meltdown through the worship of scale and the reduction of citizens to statistical units attracting subvention depending on their numbers and the volume of their protest.
 
We now have the opportunity to change. To register and react to the exceptional. To even briefly halt our collective self-directed complaint of “but what about me?” and acknowledge our duty to look at this tiny group of people, punished twice by what was once a wonder drug, and ask: “But what about THEM?”
 
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