Lily’s Blog

I’ve written a post before about Thalidomide in Ireland

Thirty-two people living with the consequences of Thalidomide in Ireland.

Thalidomide, a drug which caused birth deformities, sold to pregnant women between 1958 and 1961.

The story of Thalidomide in Ireland is devastating; a delay in banning its sale after it was known to cause birth defects, to this day paltry compensation and broken promises for the small number of people, the thirty-two people, living with its consequences.

On Tuesday, Carmel Daly McDonnell described very eloquently her struggle.

My mother took just two teaspoons of thalidomide when she was pregnant with me.

She took it once. Someone had recommended it for morning sickness. She would have taken more except it made her so ill.

When I was born with no arms and no legs she never thought of the drug which she had bought over the counter.

By the time she took it, doctors had already been advised not to prescribe it any more, but of course she did not know that. I was born in July 1962. I think the Government’s culpability is even worse in cases like mine because they knew, they had warned doctors, but they didn’t ban it and thalidomide was still sold in chemist shops over the counter.
…
My parents and brothers did everything to help me have as normal a childhood as possible. I have spent my whole life trying to be positive. And in many ways I succeeded. I have a great husband, two lovely sons.

But I am tired now. My health is getting worse and I am terrified. And I am angry that we are not getting what the Government promised our parents so long ago. If we were, my quality of life would be so much better. And things would be much easier for my family, my husband and my children.
…
Now my husband has to be with me 24/7. He cannot work or play golf. He cannot go for a pint with his friends in case I need to go to the toilet. My dignity is gone. I cannot do anything for myself. My husband has to lift me in and out of the shower. I did apply for a toilet which I could use on my own and which would cost about €4,000. I was refused point blank.

If I drop the key when I am trying to put it in the front door, then I am stuck there until someone comes along.
…
I cannot fight any more. I am too old, too tired. I cannot think about what will happen if my wheelchair breaks because I know how long I would have to wait for another one or for it to be repaired. I cannot spend all my time worrying about the future, about what happens if my husband is gone. I am worried all the time.

The full text of Carmel’s story is here.

Yesterday Thalidomide victims handed in a letter to the Taoiseach demanding a State apology for the 32 remaining Irish victims.

Finola Cassidy, spokeswoman for Irish Thalidomide Association (ITA) said the move followed two years of “stagnant” talks with Minister for Health Mary Harney … She said the Government predicted they would all be dead by now and there is no provision for middle age as mobility decreases and pain increases. Some of their members are on as little as €16 per day …

I feel very strongly for the people suffering because of Thalidomide. I am a mother of a boy with Cerebral Palsy (CP). There was nothing I could have done to prevent my son having CP, though I still feel guilty about it.

There was something the Irish government could have done to prevent at least some of the Thalidomide cases.

These 32 people deserve justice. Justice our government is denying them.

Our government – yours and mine.

It’s 50 years since the drug Thalidomide was first prescribed in Ireland.

The drug which was manufactured by the German pharmaceutical company Grünenthal, was used to treat morning sickness in pregnant women with devastating consequences for their unborn child. Some 10,000 affected babies were born worldwide before the drug was withdrawn. It was found that thalidomide crossed the placental wall and impeded the normal growth of the foetus.

There are 32 people living with the consequences of Thalidomide in Ireland.

Thalidomide caused severe foetal damage. We were born without limbs, with limbs foreshortened, with impairments of hearing and vision, as well as injury to internal organs. This caused pain and suffering, not only to ourselves, but also to our parents, siblings and to our own children and partners …
A description of the condition from the homepage of the Irish Thalidomide Association.

An unpublished study entitled “What Has Happened to Them 50 Years On? A Review of Disability in People Affected by Thalidomide” showed that just over a third were no longer working due to their disability. Many found that their disability had worsened. Pain management was found to be a significant problem, with more than half reporting regular pain.
(Source; Irish Thalidomide Association, Irish Times)

One of the authors of the study, a Dublin based GP, has thalidomide.

The Irish Thalidomide Association are in talks with the Department of Health and Children to try to improve the provisions made in 1975 for those affected by thalidomide. That settlement comprised a lump sum and a monthly pension for life, supplementing compensation from the German government, which eventually accepted liability. The Irish government has never accepted liability, the Department of Health being the regulatory authority for drugs at the time. Parents of those affected by thalidomide fought hard for a settlement. The lump sum agreed in 1975, when those affected were only children, was a few thousand euro. Depending on the level of disability, the pension now ranges from €16-€35 per day.

For some, this is their only source of income. It’s really unfortunate that the change in our economic circumstances, coincides with these talks.

In addition, the fact that the level of their disability is increasing with increasing age, was not, nor could not really have been fully foreseen, when the 1975 settlement was agreed.

We are only talking about 32 people!

In writing this piece, I contacted the Irish Thalidomide Association to check a number of facts, including the actual number of people in Ireland with thalidomide, as I had read conflicting numbers. I had a long conversation with a woman who herself has thalidomide and campaigns relentlessly for her fellow sufferers. After a long telephone conversation, I was in awe of her sheer determination, enthusiasm, and eloquence. The Irish Thalidomide Association have a great spokesperson.

Another example of altruism has to be the doctor with thalidomide referred to above, who himself has huge difficulty walking. He did a fund raising cycle in July of this year. His professional work has been with the homeless. The funds were for a mobile outreach clinic for healthcare professionals working on a voluntary basis with the homeless, and women involved in prostitution. Report here

He could teach our government a little … about altruism.

It’s 50 years since the drug Thalidomide was first prescribed in Ireland.

The same time as my mother was pregnant with me and my siblings.

A chronic condition is challenging.

Challenging because it is just that – chronic.

Having a chronic condition has meant that since birth almost, youngest mouse has been attending medical professionals. Last week he and I were in the US for a review at the hospital where he had surgery five years ago. This was our second visit back since then.

There’s something about being away, which makes one take stock, so to speak.

Over the years, we have gotten to know a fair few medical professionals. Both sides of the pond.

Neither the health system in Ireland nor America is perfect. Both health systems are flawed, flawed in different ways. Obama has a challenge ahead of him as he tries to tackle the US health system.

Flawed health systems don’t stop some amazing professionals doing amazing work.

We have been fortunate, over the years, to come across some amazing professionals. Heroes in the health system.

So having time to take stock,

To those heroes, we have met, both sides of the pond,

A big thank you.

.

The real wealth we possess is our health. Our real poverty is lack of health.

I like Patrick Holford’s discussion of health at the beginning of his book ‘The Optimum Nutrition Bible’

‘ Positive health … can be measured in three ways:
1 Performance – how you perform physically and mentally
2 Absence of ill-health – disease sign and symptoms
3 Longevity – healthy lifespan

… a profound sense of well-being … is characterised by a consistent, clear, high level of energy, emotional balance, a sharp mind, a desire to maintain physical fitness and a direct awareness of what suits our bodies, what enhances our health, and what our needs are in any given moment. This state of health includes resistence to infectious diseases and protection from the major killer diseases such as heart disease and cancer. As a result the ageing process is slowed down and we can live a long and healthy life.’

A close family friend had cancer last year, fought and won a brave battle against this invader. She went into hospital for surgery and was due out after 10 days. She finally emerged from hospital 17 weeks later. During this period I observed at close range this mighty battle while visiting her almost every day. Through observing this mighty battle being fought, I learned a lot of life lessons.

I learned how easily health can be lost.
I learned how much we take our health for granted.
I learned how important it is to have ‘fight’ in us

Longevity in in my genes. My father died at 93. My mother was killed prematurely at 71 in a car accident. Both came from big families who lived long lives. I intend beating my father. I will be reasonably happy to depart at 100, having received my 100 Euro or whatever from the President. As someone said recently, they plan on their last cheque bouncing! I thought what a great aim. In the next 50 years I intend living not existing. I have lots of changes to make before then. I want to do a PhD but don’t have time at the moment. There’s lots of time yet.

To really enjoy the next 50 years and to get the most out of them though, I have to remain healthy. That’s why I read books such as above. I don’t intend slowing down.

But whose health is it anyway? I believe we are responsible 100% for our own health. We cannot sub-contract this responsibility. We can go to professionals but we remain the owner. It is our 100% responsibility to look after our health.

To get the most out of a car, it has to have regular maintenance. Do people go for maintenance checks on their bodies in the same way as they do their cars?

I feel if we don’t play our part then we have less of a ‘leg to stand on’ in criticising the health system in Ireland. I remember a friend with a lung condition questioning if the consultant they were under was the best, as she smoked yet another cigarette. I had to bite my tongue.

I don’t know if people have seen the transparent kid toy engines. One can see the inner workings. If we could actually see our arteries clogging, would we be more aware and do more to prevent? I’m all for transparent bodies!

I loved the Bodies exhibition and would highly recommend it to all. It gave a great insight into our bodily systems.

Our health is our responsibility.
Our health is our wealth.

I think I can get down off my soap box now!