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The girl, 10, who could die from shock just by watching a scary film


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The girl, 10, who could die from shock just by watching a scary film

 

Like most children her age, Jennifer Lloyd loves watching her favourite programmes on TV.

 

 

 

But when a scary bit is about to happen the ten-year-old has to leave the room quickly - because the sudden shock could kill her.

 

 

Jennifer is one of just six known sufferers of polyglandular Addison's disease, which causes her to become ill whenever she is surprised or shocked.

 

 

 

 

The condition means she is unable to produce adrenaline in response to alarm or any sudden form of emotional or physical stress.

 

 

 

Instead her body goes into shock and her organs could shut down unless she receives medical treatment.

 

 

It means Jennifer can only watch television with the permission of her parents, who also watch with her then ensure she leaves the room if they fear something startling is about to happen.

 

Since Jennifer was diagnosed three years ago, her parents Amanda, a nurse, and Robert Lloyd, 47, an engineer, of Prestwich, Greater Manchester, have been desperate for more information on the disease.

 

 

Named after Dr Thomas Addison, who first described it in 1855, the condition affected U.S. president John F Kennedy.

 

The polyglandular form of the disease is far rarer than the ordinary one.

 

 

 

 

The inability to produce adrenaline has a knock-on effect on blood pressure, major organ function and salt levels.

 

 

Jennifer suffers from stomach and kidney problems as a result of the condition and has to take a complex range of medication to help her body cope.

 

 

Her parents also carry an emergency kit to provide extra medication-when required.

 

Mrs Lloyd, 44, said: "When anything particularly good or bad happens, we have to handle it very carefully so it doesn't surprise Jenny.

 

"We always have to expect the unexpected."

 

However, Jennifer is able to live a relatively normal life and particularly enjoys Harry Potter.

 

 

Mrs Lloyd said: "With something like Harry Potter we have to watch it with her.

 

"There was one scene in the Chamber of Secrets where all the spiders came down and she kind of got a bit worried, saying she had to leave.

 

 

"But we just tried to reassure her that it's not real. We gave her some more medication and were able to calm her down."

 

 

She added: "Jenny has learned a lot about her condition in the last few years and we are all really proud of how she deals with it."

 

 

 

The family have set up a campaign, Jenny's Pennies, to raise cash for research into the condition.

 

and

 

Pennies to find out about Jenny?s illness

TO look at the charming smile of ten-year-old Jenny Lloyd, it is hard to tell that she is anything other than a healthy schoolgirl.

 

But the smile hides the effects of a life-changing condition, with which Jenny was diagnosed just over three years ago.

 

The brave St Mary's Primary School pupil is one of only six known sufferers of an extremely rare form of a condition called polyglandular Addisons disease. It causes her to become ill when she is surprised.

 

So little is known about the illness that a campaign called Jenny's Pennies has been set up to raise cash towards more research.

 

Jenny and her parents Amanda and Robert Lloyd, of Glebelands Road, Prestwich, are now gearing up for a grand sale of arts and crafts on March 2 - Mothers' Day - after the regular service at St Mary's Church.

 

Amanda has appealed for as many people as possible to dig deep and support the event - and grab a bargain in the process.

 

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"It is great, everyone has pitched in. My mum and dad, who live in Cornwall, have made some watercolours and woodwork. Royal Manchester Children's Hospital has donated a huge panda toy, which is to be raffled. The only thing we are missing now is people to buy," said. Amanda.

 

Jenny was diagnosed with the condition in August 2004 after three weeks of tests, which had doctors scratching their heads because the condition is so rare.

 

Polyglandular Addison's disease isn't a genetic illness. It occurs when the part of the body that produces adrenaline is damaged, causing the sufferer's body to go into shock when something out of the ordinary happens.

 

Amanda said: "When anything particularly good or bad happens, we have to handle it very carefully so it doesn't surprise Jenny or it will make her ill. When we go on holiday, we have to make sure we know there is a hospital nearby. We just always have to expect the unexpected."

 

She added: "It is quite demanding on us all, especially her brother Thomas, who is 14. He sometimes find it frustrating and hard to understand.

 

"And though the staff at her school handle it really well, it can be difficult there because she looks like any other child, but it's hard to make people understand that when she gets upset, even over something small, it's not something she can get over quickly."

 

Despite the setback, Jenny has remained active since being diagnosed. She plays netball for school, dances with a local group and is always keen to fundraise.

 

To date, the youngster has circulated a collection box, served afternoon tea for friends and cleaned cars and rooms for family members.

 

Money raised from the Mother's Day event will go to the Jenny's Pennies Appeal for the Royal Manchester Children's Hospital endocrine unit, which treats and research conditions like polyglandular Addisons disease.

 

"Jenny has learned a lot about her condition in the last few years and we are all really proud of how she deals with it. She spends a lot of time around poorly children at the hospital, which has definitely helped her." said Amanda.

 

To find out more about the Jenny's Pennies Appeal, call Amanda on (0161) 773 7578.

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I'm not sure I get this. Is this a DIFFERENT kind of Addison's?

 

Geezzzz, I guess I should stop telling everyone to creep up behind Sam and yell BOOO! That's one of our favorite things to do here... she never even bats an eye.

 

"Your gonna have to try a lot harder than that..." she says. Sam has nerves of steel.

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  • 5 years later...

I have just joined this group to try and get more information on the above condition. 

I realise this is a very old post but I am thinking that sufferers of Cushings might be able to help me (nobody else seems able to).

Does having a bilateral adrenalectomy make anyone else suffer from "shock" when surprised, or given even a small shock.

The reason I am asking is my husband has no function in his adrenal glands any more.  They have been destroyed due to infarction so he not only has "Addison's" but he also does not produce any adreanline.

The thing is, when he gets even a small shock/startled (simply me breaking harder than expected in the car) he can collapse, his BP drops, he can't speak, or his speach is slurred, he gets a headache, he can't focus on anything, he needs to just lay down with his eyes shut.  Depending on the strength of the startle, it can last a minimum hour, or he can be like this for up to two hours (we haven't experienced a severe situation yet) but it takes him a day or two to fully recover.

I thought is was because he didn't have his adrenal medulla any more, but I am not reading of anyone who has had a bilateral adrenalectomy who sufferes it.

If anyone here does suffer this, can they please tell me what is happening, and if there is anything he can do to reduce the effects.  It affects him on a regular basis and has been happening ever since his adrenal glands infarcted.

Please help.

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