From the ‘Burton Mail', 31 March 2012.
A TEENAGER who battled with a complex health condition almost her whole life died suddenly at the age of 18, an inquest has heard.
Victoria Webster, of Martins Lane, Hanbury, suffered with a debilitating condition called myalgic encephalopathy (ME) since she was a baby, although she was only officially diagnosed with the condition in 2008, at the age of 14.
An inquest held at Burton Town Hall was told that over the years Victoria and her family faced significant problems with various public bodies and agencies because of the difficulties of diagnosing ME and widespread misunderstanding of the condition.
Victoria had a very severe form of ME which made her hypersensitive to light and noise, to the point that she was bedbound and had to have her bedroom completely in the dark and the windows sound-proofed.
She also suffered with dietary intolerances and had trouble controlling her body temperature.
Her body would often feel extremely painful to the extent where she couldn’t even be touched, clip her nails or brush her hair.
In September, Victoria, who missed the vast majority of her school life because of the condition, had a cordial drink which caused a severe reaction where her whole body became swollen. It took some time for her to recover from the reaction, but she appeared to be making good progress.
Her mother, Kay Webster, who described Victoria as ‘bright and intelligent’, told the hearing: “The night before her death, I stayed in her room to keep a check on her because she was having severe pain in her back and eyes, but in the early hours of the morning on September 22, she started developing breathing difficulties so I called for an ambulance.”
On arrival, medics found Victoria suffering cardiac arrest and she was pronounced dead shortly after at 5.16am.
Victoria’s death was said to have come as a ‘massive shock’ to the whole family.
A most poignant reason for all of us to keep fighting our cause.
My sincere condolences
Ronnie
How dreadful! No-one should have to suffer like this!
This very sad story shows how much we all need to KEEP pushing for MORE BIOMEDICAL research and tests to distinguish SUB-GROUPS.
This is a tragedy. To have to see your child suffer so much and then die so young is appalling. To do so without proper support and assistance from the medical profession and authorities is even worse.
We have to struggle on to have biomedical research carried out under strict controls and criteria stop this happening in the future.
My condolences to the Webster family.
This tragic death adds to an increasing toll of young people dying of ME, having suffered not only the intrinsic horrors of the condtition itself, but also trying to deal with it in the face of disbelief and downright incompetence and medical neglect by those bodies who should have been trying to support and help. It is so appalling that this sort of thing is still going on, after decades in which good medical research has existed, only to be ignored, while the likes of CBT and GET have been pushed and promoted, often with devastating effects on patients who may have suffered a milder form of the illness until they were pushed beyond their limits. Older people reading this may remember the case of Ean Proctor, a young person with ME whose case became quite well known; he was taken away from his parents and though paralysed, was put into a swimming pool as the psychiatrists “treating” him thought he would swim if he had to. Needless to say, he started to drown and had to be pulled out of the water. That I am still reading about ME sufferers struggling in the way Ean and his family did, and even dying, like Victoria, Lynn and and Sophia, over 20 years or so after Ean’s trouble, fills me with anger and despair. Surely, one day, and one day very soon I hope, those responsible for these decades of outrageous mismanagement and neglect of ME patients will be brought to justice because it seems to me they have blood on their hands.
I think it’s sad that this has happened and agree more thorough research is needed.
I am flummoxed about the fact that Victoria had this illness since she was a baby but was not diagnosed for so many years and would be interested to know why this was so.
I think there is a failing within certain parts of the medical profession but I do believe that there is a transition in viewpoints generally and more doctors and specialists are coming round to the idea that this is a real illness. Moreover I think that by constantly being negative about the medical profession it also puts a negative slant on the illness when the positivity of those who suffer from CFS/ME is obvious.
We deserve better than that.