- About the Conditions
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Ann Conroy was conceived towards the end of 1942 in the heart of war torn England. She started to strive to reach the light on 23 April 1943. Her delivery was not completed until forceps were used on the fourth day of labour; a state of obstetrics which should not have prevailed even in Leicestershire at such an inauspicious time. Her father was in the Royal Air Force on active service. She was a lively and normally developed child at first but by the age of 8 the ravages of her birth injury were affecting her skeletal system with deformation of the feet and bending of the spine, kyphoscoliosis.
Undiagnosed at that time Ann had syringomyelia, a condition of fluid inside the spinal cord, eating away at its function and causing at first only muscle imbalance, making her spine lopsided. She was a naturally chubby child and in conjunction with the bending of her spine she gained the nickname of "elephant" at school. She bore this with good cheer and excellent humour. She began to develop head and neck pain which was severe. She lost the feeling of pain and temperature from her hands and arms early in childhood and by the age of 16 she was dropping things from both hands and suffering burns from heat that she couldn't feel. The pain in her head and neck led to investigations from the age of 18 onwards, but it wasn't until she was 31 that the diagnosis was made in Edinburgh.
By that time she was partly blind. She also had a serious skin condition and high blood pressure in addition to the ravages of syringomyelia which had partly paralysed all her limbs and taken a large part of the sensitivity from them. An operation was done for her hindbrain hernia (Chiari malformation) by Professor Hitchcock in 1975 at a time when her paralysis and numbness were rapidly advancing. She made a good recovery from which with correction of the pain around the head and the neck and having been almost bed bound for some years she became mobile once more.
Professor Hitchcock sent her to the Midland Centre for Neurosurgery and Neurology in 1979 **. There was nothing more to do for Ann surgically. At no time did she harbour unrealistic hopes of recovery; she accepted the way things were but the one thing that she did not accept was that nothing could be done about such terrible problems for anyone else in the future. While she was a patient in the ward at the Midland Centre for Neurosurgery and Neurology she announced that she was going to found an organisation to solve the problems of syringomyelia. Her associated diseases by this time included kidney failure, heart failure and also a tendency to deep vein thrombosis for which she was receiving drugs to make her blood less likely to clot. The reaction of a doctor such as myself was that she should go home and take it easy. It seemed even at that time as if she would not be long for this world.
Ann went home and set to work. She drummed up support and announced the formation of Ann's Neurological Trust Society (ANTS) and for the past thirteen years she has been president of this industrious group. She inspired everyone who came into contact with her and although she had a strong personality and therefore occasionally fell out with people, nobody could have failed to have been impressed by the resolution and determination with which she faced up to things. Those who have telephoned her from all over the world were always sure of a sympathetic hearing. She was neither excessively optimistic nor was she pessimistic; she was just realistic; and her council and advice and above all her example have been an inspiration to hundreds who have attempted, and many who still have to deal with this wretchedly unfair disability.
She raised, with the help of her many able and energetic companions, over £80,000. The syringomyelia clinic started with the aid of money that she raised. The syringomyelia clinic at the Midland Centre for Neurosurgery receives no special funding from the District Health Authority despite the fact that they get money for patients who are referred. The patients are treated as part of the National Health Service commitment.
Ann died in Leicester Royal Infirmary on 6 December 1992 just a few miles from her home where she lived with her parents up to the end. She may not ever have been fit to work or to marry or to bear children and she may never have travelled far in her lifetime, but the journey of her spirit was immense. The work that she did will surely continue and the work of the syringomyelia clinic will go on.
The Trust has undergone a number of changes in the last few years and we all look forward to developing further the services that we provide to our members and carrying on the legacy that Ann left. It may, therefore, be timely for us to reflect upon how the charity came into being. Some of our members will recall these times but, increasingly, many will not.
When we renamed the charity "The Ann Conroy Trust" we did so because the old name "A.N.T.S." seemed outdated and not modern enough to attract new members and, equally importantly, financial support. We also felt that the new name honoured appropriately the memory of the founder of the charity. However, it become increasingly important for us to be more obvious about the debilitating illnesses that we seek to highlight. By wearing the distinguished 'British Syringomyelia and Chiari Society' badge we are much easier to find for those that have just been diagnosed with SM or Chiari and are looking for help, support and advice.
So, however you've come across us and by what-ever name, we would like to wish you a very warm welcome and hope that we can both share the resources and tenacity to beat these little-known conditions and together, look forward to a more positive future.
** The Midland Centre for Neurosurgery & Neurology closed in 1995. The staff, the patients and the services offered there transferred to the Queen Elizabeth hospital in Birmingham. The site of MCNN is now a housing estate. One of the roads there is named after the late Edward Hitchcock, who operated upon Ann Conroy in Edinburgh and who was later the professor of neurosurgery in Birmingham, with his clinical practice based at MCNN. Sadly, the local council were not able to name a road on the estate after Bernard Williams.