I weigh just 3 stone at 36 as rare condition is starving me to death

I weigh just 3 stone at 36 as rare condition is starving me to death

A WOMAN is fighting for her life as a rare condition starves her to death.

Nicolette Baker, 36, weighs only three stone (20kg) as she cannot eat or drink without suffering agonising pain.


She had been misdiagnosed with the mental illness anorexia her whole life, until, seven years ago, doctors finally discovered the true cause of her inability to eat.

The hopeful 36-year-old is now desperately trying to raise money for her “last chance” of surgery in Germany.

She says without it, “I will die as I become weaker and weaker and more organs starve of blood supply”.

Nicolette told Cornwall Live: “I don’t know if I’ll make it until the surgery date but I’m living for each day and the hope that I can get better is giving me something to look forward to.”

Nicolette has an extremely rare disorder called Superior Mesenteric Arterial syndrome (SMAS) that affects an estimated 0.1 to 0.3 per cent of people in the US.

It’s when the first part of the small intestine (duodenum) is compressed, causing food to build-up instead of passing through.

Nicolette described her small intestine as like a pinched drinking straw compared to a normal sized garden hose.

The symptoms are severely debilitating, the Genetic and Rare Diseases Information Center states, including pain, fullness and vomiting within half an hour of eating. 

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It leads to life-threatning weight loss and malnutrition, which some sources say is the cause of death in one in three patients. 

Bacterial infections can arise due to the food rotting inside, and the sufferer may develop a fear of eating due to the pain.

And, due to key blood vessels also being squashed, Nicolette’s organs do not get the required blood supply, she says.

Nicolette can remember being as young as four years old when she first started restricting her eating to relieve the pain.

'I FELT HUMILIATED'

She said: “For 25 years, I was treated as a mental health patient with an eating disorder throughout childhood, early teens and into adulthood. 

“I was sent to eating disorder units across the county for months sometimes to a year on end, forced to gain weight with punitive feeding regimes which my digestive system simply couldn't manage.

“I felt completely humiliated and my identity stripped away during these decades of treatment not least because I simply couldn't get it through to professionals that I could not stomach the food in me.

“I didn't have anorexia because I wanted to be thin. I simply didn't want to eat because of the pain it caused me.”

Nicolette recalled doctors said her pain and bloating was due to her stomach being unfamiliar with food.

She was admitted to general hospitals for months of forced feeding through a tube which only made things worse.

I am massively underweight and without treatment I will die as I become weaker and weaker and more organs starve of blood supply

Nicolette started to have swelling and pain around her back, which was blamed on constipation.

It was at this point that Nicolette changed to another consultant who, after a CT scan, diagnosed her with SMAS.

The doctor immediately tried a feeding tube that bypassed the compression site, but Nicolette’s condition was too severe.

She was told the possibility for surgery in the UK was ruled out due to the risks of sedating someone in such critical health.

With the help of a Facebook SMAS support group, Nicolette has been in touch with an expert in vascular compressions in Germany who agreed to perform life saving surgery on her in February.

Nicolette has started a Go Fund Me page to help cover the costs of both the operation and travel with the support of family and friends.

She wrote on the page: “This surgery costs well over £50,000 and does not include my accommodation, my flights, travel and medical insurance, Covid tests and a medical chaperone accompanying me to surgery. 

“I will need to spend six weeks in Germany and due to my severely emaciated state of health I will need to take taxis and rely on extra support for luggage and transportation.

“But from the bottom of my heart I want to thank you for reading this. Anything you can donate to this cause would be so gratefully received.

“My body is starving and I am struggling to survive on the little nourishment I can get in. 

“My multiple vascular compressions are severely restricting blood supply to my organs including my intestines and affects my ability to eat and drink.

“I am massively underweight and without treatment I will die as I become weaker and weaker and more organs starve of blood supply.”

Nicolette said: “The result of the surgery is not guaranteed but this is my last chance to reclaim my quality of life.”

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