Rare disease sufferer thanks lifesavers in Sark

A woman with a rare disease has thanked Sark’s doctor and community responders for an “amazing evacuation process” which helped save her life.

While she was on holiday in the island, Deborah Haynes, Sky’s security and defence editor, became unwell with what transpired to be an ultra-rare disease, called atypical haemolytic uraemic syndrome (aHUS).

Sark may be small in size, but the efforts made to get her to safety after falling ill were huge, according to the mother-of-three.

“You saved my life – at the very least you saved me from getting more sick and I am so grateful, so thank you very much,” Haynes said to her rescuers.

Haynes said: “It was supposed to be a really amazing little break and unfortunately, rather than being an amazing break, my body broke.

After a couple of days with no improvements in her condition, Mrs Haynes’ husband decided to get help and contacted Sark’s GP, Dr Bruce Jenkins.

“I describe it like an invisible storm inside my body and things are just not working, like my kidneys are shutting down and I was feeling incredibly sick and weak and desperately in need of help,” said Haynes.

After a urine test suggested something was definitely wrong, she was taken by tractor to the port, where the island’s marine ambulance, the Flying Christine, took her to Guernsey, before she was sent from the Princess Elizabeth Hospital to the UK for care.

“I went from a hotel bed in Sark to the intensive care unit of UCH in London in just over 11 hours which was incredible,” she said, thanking medical staff and community responders for their “incredible response”.

aHUS is chronic, rare disease that is estimated to affects fewer than one person per two million people.

Essentially, the disease affects the immune system and starts to attack the body’s own blood cells, leading to further complications.

Between 10-15% of patients die in the early, initial stage with up to 70% progressing to renal failure and needing a life time of dialysis or dying.

The instance in Sark was Mrs Haynes’ second experience with aHUS and she hopes to raise awareness of the disease.

“I’m so lucky that the medical expertise is there to help treat this,” she said.