'Don't lose hope' - Mother uses experience of illness to spread support

Sue Burrell has a rare condition called acute intermittent porphyria, she's been working with the charity

Sue Burrell has a rare condition called acute intermittent porphyria, she's been working with the charity to raise awareness of the condition all through the pandemic. - Credit: Sonya Duncan

At 27, Sue Burrell was embarking on a successful career and was physically fit and healthy enjoying snowboarding trips abroad and regular swimming.

But after an episode of severe pain, brought on by a sickness bug in 2008, her life changed overnight after being diagnosed with a rare genetic and metabolic disorder which had caused her sister years of pain and paralysis.

Mrs Burrell, now aged 41, from Ruskin Road in Costessey, has acute intermittent porphyria (AIP), and she now supports others going through the illness with the charity British Porphyria Association as well as educating healthcare workers about the condition. 

Sue Burrell has a rare condition called acute intermittent porphyria, she's been working with the charity

Sue Burrell has a rare condition called acute intermittent porphyria, she's been working with the charity to raise awareness of the condition all through the pandemic. - Credit: Sonya Duncan

AIP mostly affects young and middle-aged women and changes the overall chemistry of the body causing pain for sufferers.

The attacks, which could last four days, brought on by the condition caused her extreme nerve pain in her back preventing her from walking.

It also forced her to take redundancy from her job as a training and development specialist for a national company that provided NHS software in late 2008 due to multiple hospital visits in Kent where she lived at the time.

She said: "I knew I had the gene that causes the condition because my sister became desperately ill with it when she was 19. I had testing when I was 15."

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The charity advocate did everything she could to protect herself from the condition including avoiding alcohol, certain medications and keeping healthy.

Mrs Burrell, who has a four-year-old daughter, added: "Four days after the sickness bug in the office I had really bad back pain. I felt more drained than usual. I spoke to my sister and she said it sounded like AIP. I went into denial because I knew how horrendous it was."

Sue Burrell (right) from Costessey with her husband Ian and four-year-old daughter Abi.

Sue Burrell (right) with her husband Ian and four-year-old daughter Abi. - Credit: Sue Burrell

After a series of tests and going to hospital, she said: "The doctors did not know what to do. They had not come across another porphyria patient before. My sister travelled to be with me and became my advocate."

The attacks started out happening when her period started every month but in the first year they became more frequent and she ended up in hospital every week on IV drips and strong painkillers.

Sue Burrell, from Costessey, receiving an IV infusion at home in 2015 to treat her acute intermittent porphyria.

Sue Burrell, from Costessey, receiving an IV infusion at home in 2015 to treat her acute intermittent porphyria. - Credit: Sue Burrell

"I was very weak. You get really intense pain which I felt in my back and legs. I could not bear a duvet touching me. The pain was excruciating," Mrs Burrell added.

She said she was lucky not to end up paralysed from the condition because it was diagnosed early, which she said was key.

Her sister, who she described as inspirational and determined, has had to relearn to walk several times in her life after the disease left her unable to move.

Diagnosis and knowledge of the condition was improving within the health profession but she said there was more to do to promote the symptoms.

After years of IV drip treatments, the mother-of-one started a drug trial for the condition three years ago and since then she has a monthly injection which controls the attacks.

And such was the success of the treatment, she could stop taking her many painkillers by Easter 2019.

Mrs Burrell, who moved to Norfolk in 2012 a year after marrying her husband Ian, said: "I have had no pain since then. I'm really lucky."

The pair welcomed their daughter Abi through IVF, but that was unrelated to her condition, and she was considered extremely clinically vulnerable in the lockdown because of kidney damage from previous AIP treatment.

She is now feeling positive and enjoying her role as strategic lead on engagement and advocacy for the British Porphyria Association.

Sue Burrell (centre), from Costessey, presenting at the British Porphyria Association's 20th anniversary event in 2019.

Sue Burrell (centre), from Costessey, presenting at the British Porphyria Association's 20th anniversary event in 2019. - Credit: Sue Burrell

During the lockdown she and other committee members have been offering support to people living with the disease over the phone or online but they are hoping to do more as restrictions ease.

Mrs Burrell added: "My advice to anyone going through the illness is get as much information as possible. Don't lose hope and keep fighting. You will find something that works for you. When you are in the depths of it there is that support out there."

For support and advice visit www.porphyria.org.uk

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