Ann Conroy

For those living with

Chiari Malformation, Syringomyelia and associated conditions

Ann Conroy

(1943 - 1992)

 

Ann Conroy was born in April 1943, in the heart of war-torn England. Her father was in the Royal Air Force at the time, on active service.  Ann’s birth was not completed until forceps were used, on the fourth day of her mother’s labour.  It is very likely that these events had a direct bearing on her later development.


Ann was a lively and apparently normal child at first but, by the age of 8, she was beginning to develop deformities affecting her skeletal system, including a bending of her  spine - the condition referred to as scoliosis. The underlying cause, undiagnosed at the time, was syringomyelia, creating muscle imbalance and making her spine lopsided. She was also a somewhat chubby child and, together with the bending of her spine, this gained her the rather cruel nickname of "elephant" at school.  Ann nevertheless bore this with good cheer and excellent humour.


Later, Ann began to develop severe head and neck pains.  She went on to lose pain and temperature sensations from her hands and arms. By the age of 16 she was dropping things from both hands and suffering burns, from hot objects that she couldn't feel.  She underwent medical investigations from the age of 18 onwards but it wasn't until she was 31 that the correct diagnosis was made, that of syringomyelia, caused by an underlying Chiari malformation.  At this stage Ann was also partly blind, had developed a serious skin condition and had high blood pressure.  The syringomyelia was advancing rapidly and had partly paralysed all of her limbs.  It had also taken away, from them, a large amount of  normal sensation.

Ann underwent surgery, in Edinburgh, in 1975, the operation being carried out by Edward Hitchcock [1].   She made a good recovery and, having been almost bed-bound for some years, she became mobile once more. 


Ann was sent to the Midland Centre for Neurosurgery and Neurology[2], near Birmingham, in 1979. Her associated diseases by this time included kidney failure, heart failure and a tendency to deep vein thrombosis, for which she was receiving blood-thinning drugs. There was, by then, nothing more that could be done for Ann, surgically.  Indeed, at no time did Ann harbour unrealistic hopes of further recovery and she accepted the way things were for her.   She did not, however, accept that nothing could be done for other people, who might face similar problems in the future. While still a patient in the Midland Centre, Ann duly announced that she was going to found an organisation to solve the problems of syringomyelia.  Bernard Williams, who was looking after Ann at the time, thought that she simply should go home and take it easy; it seemed, even at that time, that Ann would not be long for this world.


Ann duly went home but did not take it easy.  Instead, she set to work. She drummed up support from amongst her family and friends and announced the formation of Ann's Neurological Trust Society (ANTS) [3].  She became president of this industrious group and inspired everyone who came into contact with her.  Ann had a strong personality and, as a result, occasionally fell out with people but nobody could have failed to have been impressed by the resolution and determination with which she faced up to everything. People who 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.  Her council and advice and, above all her example, were an inspiration to hundreds.  The money that Ann raised, with the help of her many energetic companions, enabled a dedicated syringomyelia clinic to be set up at the Midland Centre for Neurosurgery.

The above account of the life of Ann Conroy is an edited version of an original biography written by the late Bernard Williams.  The final paragraph of that account stands out:


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.  

 


[1]Edward Hitchcock was later appointed as Professor of Neurosurgery, in Birmingham. 

[2]The Midland Centre for Neurosurgery & Neurology (MCNN) closed in 1995. The staff, the patients and the services offered there transferred to the Queen Elizabeth Hospital Birmingham. The site of MCNN is now a housing estate. One of the roads there is named after Edward Hitchcock, whose  clinical practice was based at MCNN.   Sadly, the local council were not able to name a road on the estate after Bernard Williams.

[3]When we renamed the charity "The Ann Conroy Trust" we did so because the old name "A.N.T.S." seemed outdated and less likely to attract new members and financial support. We also felt that the new name honoured, appropriately, the memory of the remarkable lady who founded the Charity.

Ann Conroy Trust CIO

registered in England number 1165808

0300 111 000 4