A 24-year-old who has been unable to eat for a decade has revealed the heartbreaking symptoms that led to her being diagnosed with a rare and terminal illness.
Annie Holland, from Adelaide, Australia, first noticed signs something was wrong when she was 12.
‘I started struggling with dizziness, fainting spells and digestive issues,’ she said.
‘Whenever I eat, it leads to severe nausea, vomiting, extreme pain, and multiple bowel obstructions.’
She eventually developed multiple organ failure and surgeons were forced to cut out 10 feet of her digestive system as a result.
This left her with intestinal failure, a condition that means her digestive system is no longer effective at absorbing enough nutrients and liquids to keep her alive.
To keep her alive medics had to insert a tube into a vein near her heart to supply her with the nutrients and liquids she needs through an intravenous (IV) bag.
This system, called Total Parenteral Nutrition (TPN), has been her only source of food since she was 14.
24-year-old Annie Holland ,who has been unable to eat for a decade, has revealed the heartbreaking symptoms that led to being diagnosed with a rare and terminal illness
‘It’s hard to explain to people what it feels like to never be able to eat,’ she said.
‘Food is such a normal part of everyday life for most, but for me, it’s something I can’t even consider.
‘There’s a lot of isolation that comes with it. I can’t join in on social meals, and the smell of food cooking can make me feel incredibly sick.’
It was only when Ms Holland turned 18, six years after she first started experiencing symptoms, that her doctors finally uncovered the source of her illness.
She was diagnosed with Autoimmune Autonomic Ganglionopathy (AAG), an extremely rare and poorly understood autoimmune condition.
Only 100 people are diagnosed with it each year in the US, with no equivalent statistic in the UK.
AAG causes the body’s immune cells, which normally protect it from infection, to mistakenly attack the nerve cells that govern how the organs work.
In many cases, patients only survive between six to nine years after their diagnosis.
Four years later, Ms Holland was given the devastating news that her condition was terminal.
Her condition led to multiple organ failure and surgeons were forced to cut out 10 feet of her digestive system as a result
‘I never thought this would be it. I never saw my life ending soon…but not being able to plan or even think about the future just breaks my soul,’ she said.
‘Months of horrible torturous symptoms, procedures, surgeries and awful medications. One of those being high dose steroids.
‘Anyone who has had steroids know the awful side effects that come along with it. One of the most obvious moon face and fluid retention. Leaving me sometimes gaining 20 plus kilos in one week.’
‘The pain, the suffering, the loneliness no one can understand until they have been in that position.
In a heartbreaking post on Instagram, she detailed how she and her medics had agreed that if her heart stops, she will not be resuscitated.
She explained that her bones have grown so brittle from her condition that they would not be able to support any attempts at cardiopulmonary resuscitation (CPR).
While the TPN system has prevented her from starving, it’s not without its dangers.
The tube that travels directly to a key vein near her heart provides a potential route for dangerous bacteria to enter her bloodstream and trigger a life-threatening infection.
Eventually medics were forced to insert a tube into a vein near her heart to supply her with the nutrients and liquids she needs through an intravenous (IV) bag. This system, called Total Parenteral Nutrition (TPN) has been her only source of nutrition since she was 14
‘I’ve become my own nurse at home,’ Annie explains. ‘I had to learn to set up my TPN in a completely sterile way. If even a tiny bit of bacteria gets into my line, it can travel straight to my heart.’
This has led to her developing sepsis, a life-threatening condition where the body’s immune overreacts to an infection causing damage to its own organs, 35 times.
These infections have also taken a toll on the veins needed for the TPN to work.
Ms Holland is now on her last usable blood vessel for TPN, a prospect she admitted was ‘terrifying’.
‘If I lose this last line, I will enter end-of-life care and will starve to death,’ she said.
Despite her own hardship Ms Holland has chosen to help make a difference to others facing a similar health battle.
Ms Holland receives her care at the TPN unit at Flinders Medical Centre and while she said the care she had received from nurses and doctors had been amazing, she wanted to make it even better for future patients.
‘I want to help keep the unit running and provide better facilities,’ Annie noted.
‘Right now, the unit is in a small, crowded office in ICU (intensive care unit) with limited space to care for patients.’
Setting up a GoFundMe she said proceeds would help hire more nurses, provide training for medical staff, support families of TPN patients, and purchase essential equipment.
‘My illness may be terminal, but I want my legacy to be about helping others. I’m not giving up. There’s so much more I want to do to help others, even if my time is limited,’ she said.
So far Ms Holland has managed to raise the equivalent of over £4,500 ($5,800).
