My 61st Entry still strikes a cord within me.
First, the idea of fundamentalism… the need to have an answer. People ask me quite often… “What happened? Why were you born the way that you were born?” It seems that Canadians ask me most often if I was a thalidomide baby. Thalidomide was a drug developed in Germany and sold between 1957 and 1961. It was prescribed mostly to pregnant women for morning sickness. Estimates vary but it believed that there were 10,000 to 15,000 babies affected by thalidomide.
In 1984 I went to the University of Texas Health Science Center Dallas… a place I had spent much time during the early 80’s having had two major surgeries in 1981 and 1982. I consulted with two individuals in the Division of Clinical Genetics. They concluded, “After reviewing your medical history and examining you carefully, we feel that your symptoms fit most closely with the Moebius Syndrome. This would account for your limb anomalies, facial nerve palsy, tongue anomalies, small mouth and facial asymmetry.” The report went on to say that the cause of Moebius Syndrome is not clearly known…
OK… the internet is so cool. I’ve had this report for 24 years and it has never occurred to me to go out to the internet and type in Moebius Syndrome. Well… I just did… You know… There’s a Moebius Syndrome Foundation.
I think there’s a time in all of our lives that we seek to find answers… and hopefully a time that we seek possibilities…
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3 comments:
As I explained at Monsters and Critics dot com under
Thalidomide maker doubles payout to German victims of drug
May 8, 2008, 12:21 GMT
http://www.monstersandcritics.com/news/health/news/article_1404227.php/Thalidomide_maker_doubles_payout_to_German_victims_of_drug
X-rays can give you (your radiologist) conclusive evidence as to whether the damage pattern caused by thalidomide is present in your limbs.
that URL again
http://www.monstersandcritics.com/
news/health/news/article_1404227.php/
Thalidomide_maker_doubles_payout_to_
German_victims_of_drug
As to the possibilities, here are some of my notes from
Janet McCredie, Beyond Thalidomide – Birth Defects Explained, London, The royal society of Medicine Press, 2007
§ Late-onset neuropathy in thalidomiders will be recognised as a sensory equivalent of post-polio syndrome p. 405]
Since turning 40, many thalidomide victims have complained of tingling and numbness in their hands and feet.
Some also describe shooting pains.
Others describe increasing deafness, tinnitus or deteriorating vision.
The onset at middle-age of symptoms of sensory neuropathy is parallel with the experience of people who had [...]/
Thalidomide attacked the embryo, not the infant.
It attacked the sensory, not the motor nerves.
The agent was chemical, not a virus.
But the response in the human body is basically similar.
p. 406
When the thalidomiders reached middle age, they also sustained the second physiological loss of neurons as normal degenerative processes took hold.
In their case, the second reduction of axon numbers may be critical.
They experience late-onset sensory symptoms in their reduced limbs
because
the second drop-out of sensory axons depletes the population of their peripheral nerves,
perhaps below the threshold level where symptoms occur.
p. 406
Normally, our peripheral nerves contain surplus axons in reserve above the threshold number to balance any nerve damage.
What neurologists term “subclinical neuropathy’
is having less than the normal number of nerve fibres,
but enough escape with symptoms,
i.e., less than normal but more than the threshold at which symptoms appear.
Thalidomiders have coasted along for 45 years with subclinical neuropathy.
At middle age, the additional physiological degeneration of sensory nerves may deplete the axon population to a level below the symptom threshold.
A subclinical neuropathy (neuropathie ; maladie du systeme nerveux) then becomes a clinical (symptomatic) neuropathy
This is occurring in the thalidomiders at present.
Next alinea
There is a practical aspect in which it is important to recognise the sensory neuropathic basis of their disorder.
Medical attendants must understand that these people have neuropathic bones and joints
==>
they run the risk of poor results from surgery.
It is a well-established fact that fractures and surgery in neuropathic bones are slow to heal or may end in non-union.
The thalidomiders who present to doctors with arthritis or skeletal trauma need to be treated conservatively, as neuropathic bones and joints.
Surgeons need to be cautious in offering joint replacements and other major procedures.
Healing is by no means assured.
p. 408 B quote
... for we live, move, have a being and are subject to the actions of the elements and malice of diseases in that other world, the truest Microcosm, the Womb. of our Mother.
end of quote
p.409
The neural crest emerges from erstwhile obscurity to take its place as a highly vulnerable, extremely important stimulator of embryonic growth, and as easy target for malicious sensory neurotoxins.
IVO’s COMMENT
Once we find the answers,
it would seem that the THEORETICAL possibilities
which are open to thalidomide monsters, like myself,
are rather limited.
But wo-man’s greatness consists precisely in being able to transcend these limitations.
If I call myself a thalidomide MONSTER
that’s,
to quote Ayn Rand in calling selfishness a virtue,
"[f]or the reason that makes you afraid of it."
If you want to be able to transcend your limitations,
it’s important that you first know what those limitations are.
For me, the reading of McCredie’s quoted book was revealing.
Firstly, it explained why I feel pain in my body.
Secondly, it explained why I cannot concentrate in the evening (The answer is that I don’t have enough cells). The only thing I can do is going to bed at 8 p.m.
I therefore wonder (but I am no quack) whether for you, it would not be important to determine whether your damage is caused by thalidomide.
Please feel free to delete my posts.
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