Complications from ME led to death of teenager

[Min]

http://www.burtonmail.co.uk/News/Complications-from-ME-led-to-death-of-teenager-30032012.htm

08:00 Saturday 31 March 2012 Written by KATIE BOWLER
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Complications from ME led to death of teenager

A TEENAGER who battled with a complex health condition almost her whole life died suddenly at the age of 18, an inquest has heard.

Burton Town HallVictoria 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 couldnt 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 sbecame 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.

Victorias death was said to have come as a massive shock to the whole family.

comments can be left

 

[justy]

Sad and shocking. Sending symapthies to her family and friends.
When is this going to be publicly recognised and people with M.E properly treated?

 

[Firestormm]

Not another young soul. Just staggering. Completely shocked. Rest in peace Victoria x

 

[Carrigon]

I'm just surprised someone in the press is actually admitting she died from ME. It's about time they started printing the truth.

I feel bad for her that her life was ruined and taken away. And her poor family.

 

[Boule de feu]

I have never heard that babies could be born with ME.
It must be very unusual?

My prayers go the family.

She is not suffering anymore.

 

[Nielk]

It is so disheartening to hear of these deaths. My condolences to the family and friends. What a loss!

 

[Mya Symons]

That poor girl. I can't imagine having ME/CFIDS since birth.

Are there medical professionals actually admitting she dies of ME? This surprises me since they had the perfect opportunity to blame it on the allergic reaction.

 

[Googsta]

Thankyou for posting this. It is absolutely heart breaking but it must be told.
Poor kid

 

[Ian]

This is exactly why the CFS/ME diagnosis is so dangerous. As soon as they reach this magical diagnosis, they abandon looking for the cause of the symptoms and fob patients off with GET and other insane 'treatments'.

 

[Carrigon]

I don't believe they are born with it. It's the vaccines they inject newborns with. Why would you inject a baby with a toxic vaccine? It destroys their undeveloped immune system and creates disease. We are all vaccine victims.

 

[Guido den Broeder]

Sad as the story is, this is likely to have been a mitochondrial defect that she was born with, rather than ME.

 

[Googsta]

Sometimes I think we need to try a little more to take things at face value, otherwise we can tend to become as cynical as those who criticise us.

Time & time again I have seen a report here on how some poor soul has succumbed to this dreadful disease only for everyone to throw their hat in the ring as to what they think the person had.

None of us here have the facts, it could cause alot of suffering to family & friends to see these posts. They may feel we are criticising them for not finding 'the real cause' of their illness. I'm sure none of us would want to cause them additional suffering.

 

[Firestormm]

ME cited by coroner as likely cause of teenagers death | Uttoxeter Advertiser | 4 April 2012

by Tony Britton on April 7, 2012: http://www.meassociation.org.uk/?p=11093

From the Uttoxeter Advertiser, 4 April 2012 (story by Katie Bowler).

A TEENAGER who battled with a complex health condition for almost her whole life has died suddenly aged 18, an inquest has heard.

Victoria Webster, of Martins Lane, Hanbury, suffered with a condition called Myalgic Encephalopathy (ME) since she was a year old, although she was only officially diagnosed with the condition in 2008, aged 14.

An inquest, held at Burton Town Hall last week, heard how over the years Victoria and her family faced significant problems with the authorities and agencies because of the difficulties of diagnosing ME and a misunderstanding of the condition.

Victoria had a very severe form of ME which made her hypersensitive to light and noise, to the point where she was bedbound and had to have her bedroom completely blacked out 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 she couldnt be touched 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 led her to have a severe reaction and her whole body swelled up. It took sometime for her to recover from the reaction, however, 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.

Victorias death was said to have come as a massive shock to the whole family.

Mrs Webster added: The day before she seemed as well as she could be. We had no idea this was going to happen. Shed had a setback with the cordial drink a while before, but she was recovering and we thought she was doing better than she had been for some time. Her death was a massive shock. Police were called to investigate the circumstances of the death and it was concluded that there were no suspicious circumstances.

South Staffordshire Coroner Andrew Haigh offered his sincere sympathies to the Webster family when recording his verdict of a natural death with complications of ME.

He said: Although we cant be clear on what the exact complications of ME were at the time of her death, it is very apparent that this was the likely cause.

She suffered with ME her whole life and the effect was subject to significant variation. This is a very tragic case and I offer my deepest condolences to the family. Mary-Jane Willows, of the Association of Young People with ME, supported the family throughout Victorias condition.

In a statement released after the inquest, she said: The death of any young person is tragic and our thoughts are with Victorias parents at this very difficult time.

An unexplained death is even more difficult to deal with and, although Victoria had ME, this was totally unexpected and a shock to her parents and many friends.