Girl, 17, to have life-changing op to relieve relentless agony
PANCREATITIS is described by the NHS as one of the most excruciating conditions anyone can experience.
As well as causing major swelling of the pancreas, the disease leaves people with agonising abdominal cramps and unrelenting sickness.
But while most will see their symptoms disappear within a week, the same cannot be said for 17-yearold Fern Cockrell.
She has suffered with a chronic hereditary form of the condition ever since she was 18 months old, and for the past two and a half years the pain has never subsided.
“To watch my child suffer endlessly has been heartbreaking,” said her mum, Sally-Anne Ashdown.
“She is living in agony 24-7. She has missed so many holidays, and celebrated her 11th and 17th birthdays in hospital because of this horrendous condition.
“There have been so many plans which have never materialised, and she had to drop out of school without taking her GCSEs.
“She tried so hard to stay at home last Christmas, but she couldn’t, and woke up on Christmas Day in a hospital cubicle. That’s no life for a 17-year-old.”
When Fern was a baby she was in and out of hospital with constant pains in her stomach.
Doctors frequently tested her for a suspected urine infection, but scans always came back clear.
It wasn’t until she was five, when her father, Matthew Cockrell, was diagnosed with hereditary pancreatitis, that medics finally took her condition seriously.
“The consultant said our children had a 50% chance of inheriting it, so I asked for Fern to be tested,” added mum-of-two Sally-Anne.
“It’s awful on reflection to think that she was going through this pain ever since she was 18 months old.”
For most of her childhood Fern, from Barry, would fall ill between two and six times a year and would need a five-day spell in hospital before the pain went away. But things took a turn for the worse in August 2016, when during one of her regular admissions, she failed to improve.
“Her diagnosis was reclassified from acute pancreatitis to chronic because the pain was no longer going away,” said Sally-Anne, who works as a medical secretary at University Hospital Llandough. “When it was acute, her condition would be quite obvious to the doctors because her amylase levels (which signal a pancreatic disorder) would be through the roof.
“But when it was chronic her amylase levels would stop rising as there were not enough active enzymes in her blood.
“Unfortunately, because her hereditary form of the condition was so rare, doctors didn’t know what to do about it.
“Fern’s pain threshold is now so high that she often appears to be comfortable. Most people with the condition are bent over screaming in agony, and that’s how doctors are used to seeing it.”
As there is no specialist help for patients in Wales with chronic hereditary pancreatitis, her family were forced to travel to Oxford for advice from a top surgeon.
He recommended that the only way Fern could rid herself of the never-ending pain was to have a total pancreatectomy with an islet autotransplantation.
This involves completely removing the pancreas, gall bladder and possibly her spleen, “re-piping” her intestines and transferring insulin cells into her liver in the hope it will eventually carry out the role of the pancreas.
“This operation is not carried out by the Welsh NHS,” added SallyAnne.
“So we had to get the consultant in Oxford to convince a panel of medics in the Welsh NHS to fund it. And we were successful.
“Yes, this surgery is life-threatening in its own right, but Fern knows that and thinks it’s worth taking the risk to finally get rid of the constant pain she’s in.
“She will become an insulindependent diabetic after the surgery is carried out, but that’s a small price to pay.”
Fern is set to undergo the lifechanging surgery on February 21 at Churchill Hospital in Oxford.
“This surgery will hopefully give Fern her life back.
“She has been absolutely brilliant. She has such a desire to have the procedure, get back to her education and fulfil her dream of becoming a midwife.
“She’s still so resilient and optimistic. Her big brother, Sam, has also gone through a lot as we’ve had to be by his sister’s side so much.”
Sally-Anne, who is now a qualified counsellor, said it would have cost the family £500,000 to get the total pancreatectomy carried out in the United States.
Luckily Fern’s dad, Matthew, who has a milder form of the disease, said his pain “burnt away”, which meant he never needed surgery.
The Genetic Alliance UK, which supports people with rare illnesses, believes more needs to be done to improve their treatment, care and access to information.
It claims patients in Wales are especially disadvantaged, with access to just 40 NHS-funded specialist medicines compared to 70 in England and nearly 140 in Germany.
Scientists, clinicians, senior politicians, NHS staff, care officials and patients were all set to gather at the Senedd on Thursday, February 14, to discuss how Wales can improve its care for those with rare diseases.
The event aimed to preview Rare Disease Day, when Genetic Alliance UK will publish a series of recommendations aimed at reducing patient deaths; speeding up diagnosis and access to care and treatment; improving patient quality of life; protecting and promoting research; reducing inefficiencies of health and social care.
Genetic Alliance UK chief executive Jayne Spink said: “One person in every 17 will live with a rare disease at some point in their lives – around 183,800 people in Wales and more than the estimated number of older people currently living with dementia.
“People living with a rare disease in Wales deserve the highest standards of care and support.
“Genetic Alliance UK welcomes this opportunity at the Senedd.”