Bradford mum raises awareness of teenage daughter's little-known condition

RARE: Shelby Clough, 16, who suffers from the little-known condition familial periodic hypokalemic paralysis, with her mother Joanne

RARE: Shelby Clough, 16, who suffers from the little-known condition Familial Periodic Hypokalemic Paralysis

First published in News Bradford Telegraph and Argus: Photograph of the Author by , T&A Reporter

WHEN Shelby Clough fell out of bed one morning her mum thought it was a prank to avoid school - but it turned out to be a sinister sign of a rare genetic illness that now rules the teenager's world.

Shelby was only ten when it happened and she found she was unable to get up off the floor.

Her mum Joanne Clough thought her daughter was faking the sudden paralysis that morning but it was to be the first of countless similar attacks that can leave Shelby , now 16, desperately ill for hours, struggling to breathe and at serious risk of having a heart attack - unless she gets urgent medical help.

Doctors at Bradford Royal Infirmary eventually diagnosed her with Familial Periodic Hypokalemic Paralysis - a condition so unusual that Shelby has to carry a letter with her from a former consultant to explain it and her needs.

Doctors carried out rafts of DNA and genetic tests before eventually being able to give her a diagnosis.

Miss Clough, of Rowantree Drive, Thorpe Edge, said: "No-one knows much about it so they don't understand what it's like for Shelby.

"When she gets the attacks she can't even move her thumb. It's distressing.

"She has aches and pains all the time but these attacks can just happen - there are things she can't do like other girls her age. She doesn't go out much with friends, she's missed school and she can't go swimming. She's missed out so much because of it."

The family have tried to get a stairlift fitted at their home but say life would be easier if they could move into a bungalow instead.

"I'm Shelby's carer and it's a struggle for both of us at times," Miss Clough said.

"Shelby is a tall, young lady and I'm only 5ft but we do the best we can to cope and get by - we just want more people to get to know about this crippling condition. It might help us and others."

Shelby's paralysis from her neck down happens when her potassium levels drop - when it happens, she needs to go into hospital and be given potassium intravenously.

Miss Clough said: "Now Shelby has turned 16 she is not treated as a child any more so we are seeing different consultants and are on different wards which is a bit scary. It's like starting all over again with it because we know what she needs but feel as though we are being know-it-alls.

"It's heart-breaking when well-meaning nurses ask her on the ward to just give them her arm or hop on the bed when she can't move at all. Unless more is done to raise more awareness about this condition and how debilitating it is - then people just won't understand."

Consultant paediatrician Dr Simon Frazer, said: “Familial Periodic Hypokalemic Paralysis is an extremely uncommon condition, rarely seen in the UK and therefore many doctors and nurses may never have come across it before. It’s great that Joanne is raising awareness of Shelby’s plight in public as only good can come from it.”

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