When Yolanda Acuna Ocana was diagnosed with type 1 diabetes, her family was almost relieved.
She was 14 and had been suffering from inexplicable weight loss, constant thirst and tiredness, and they were grateful for a diagnosis.
Now — sadly — they feel very differently about diabetes.
Last April, aged just 39, Yolanda died as a result of the disease, leaving behind a loving husband and devoted family.
Yolanda Acuna Ocana (left) with her sister Nicky Dixon. The effects of her missed doses of insulin were becoming apparent by her late 20s
‘No one expects diabetes to kill someone so young in this day and age,’ says Yolanda’s sister, Nicky Dixon, 38, a company director from Surbiton, Surrey.
People often think diabetes, type 1 or type 2, is not a serious condition, says Dr Jeremy Allgrove, a paediatric endocrinologist at Barts and the London NHS Trust.
‘But if you don’t look after yourself, it’s a killer.’
The figures are stark: type 1 diabetes reduces life expectancy on average by 20 years.
The condition is caused by the body attacking the cells of the pancreas responsible for making insulin.
Insulin helps the body break down glucose from food and turn it into energy; without it, blood sugar levels become dangerously high, causing damage to blood vessels.
Around 300,000 Britons have the condition. It can run in families, but experts believe the condition is usually triggered, possibly by some sort of virus.
‘She bitterly regretted not having taken her insulin properly,’ said Nicky of her sister who died last April
Unlike type 2 diabetes, type 1 is characterised by insulin dependence — once diagnosed, a patient must inject themselves daily for the rest of their life.
The problem is that many people don’t take their insulin as they should, with potentially fatal consequences.
Yolanda was supposed to inject herself seven times a day, but when she left home for university at 18, she reduced her intake because the jabs were causing her to put on weight.
This growing trend has even been given a name: diabulimia.
‘We were out one night when she suddenly passed out,’ Nicky recalls.
‘I called an ambulance and when she came round she admitted to me what she had been doing.
‘She’d put on a stone-and-a-half since starting on insulin. She found the weight and having diabetes hard to deal with.
‘I told her she would make herself ill — but she was young and not thinking about what her health when she was older.’
One in three women under 30 with type 1 diabetes deliberately misses doses of insulin, according to charity Diabetes UK.
‘A symptom of undiagnosed type 1 diabetes is weight loss — but once that person goes onto insulin they put on weight, and that can be hard to handle,’ says Cathy Moulton, clinical adviser at the charity.
Not taking adequate insulin leads to long-term health problems.
When the body cannot access sugars from food, it starts to break down fat and protein, leading to by-products called ketones, which are toxic to the body.
This can lead to complications including blindness and kidney failure.
It can also cause nerve damage known as neuropathy, where the patient loses sensation in their feet, putting them at risk of amputation because wounds won’t heal.
High blood sugar also furs up the arteries, increasing the risk of stroke or a heart attack — the leading cause of death among type 1 diabetics.
‘If you stop taking insulin, symptoms are likely to develop within a few hours,’ says Dr Allgrove, adding that patients can, like Yolanda, simply pass out as a result of high blood glucose and the ketones.
‘Diabetes requires round-the-clock dedication, every day.’
The effects of Yolanda’s missed doses were becoming apparent by her late 20s.
She developed problems with her kidneys and suffered diabetic retinopathy (damage to the retina in the eye caused by high blood sugar) for which she needed laser surgery.
‘She also developed neuropathy,’ recalls Nicky. ‘Once she went to a chiropodist who found she had a piece of glass wedged into her foot, but she hadn’t noticed.’
Yolanda married in her mid-20s and dreamed of having a family, but her failure to take her diabetes seriously thwarted this.
‘If you look after yourself, fertility and pregnancy should be relatively normal,’ says Dr Allgrove.
However, although Yolanda had started taking her insulin properly by her 30s, she was told she was too ill to have children.
‘Her kidneys were starting to fail and she needed a transplant. Getting pregnant would have pushed her body into full-blown kidney failure,’ says Nicky.
Yolanda was put on the waiting list for new kidneys and a new pancreas in 2005.
‘When the call came two months later to say there was a donor available, she was in New Zealand attending her father-in-law’s funeral,’ says Nicky.
‘It was devastating for her.’
She got a call about a second donor in February 2010, but the donor organs were unsuitable.
By July that year, it was not just her kidneys and eyes causing her problems. A blister on her big toe developed into a diabetic ulcer.
Minor injuries can lead to more serious medical problems for diabetics because poor blood circulation means wounds do not heal well. Yolanda was warned her foot might need to be amputated.
‘She was devastated, screaming: “Please don’t let them do it”,’ recalls Nicky. ‘So the doctors just cut away the affected tissue.’
Within months, Yolanda’s kidneys failed. She also suffered a deep-vein thrombosis in her leg and developed cataracts which reduced her vision.
Nicky says: ‘She bitterly regretted not having taken her insulin properly.
‘She once told me she wished she could go back in time and do things differently.’
The family still hoped Yolanda would have a transplant, but last Easter she had a series of heart attacks and ended up on life-support. After a week, her family agreed to turn off the machine.
‘We all felt numb,’ Nicky says. ‘Yolanda had been so full of life; at no point did we ever consider she would die.’
Losing her sister has been a warning to Nicky, who was also diagnosed with type 1 diabetes at the age of 21.
‘What happened to Yo makes me even more careful,’ she says. ‘I eat well and exercise and never forget to inject myself.’
Despite this, she does suffer from diabetic retinopathy, and some days feels incredibly tired.
However, she is training for the London marathon in April, which she will run in her sister’ memory.
‘I want to raise awareness of diabetes and the need for people to sign up for donor cards,’ Nicky says.
‘Had a donor become available to Yolanda, she might still be here today.
‘Most of all, though, I’m doing this so that people won’t forget my sister.’