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Model with rare ‘cocoon syndrome’ has NDIS claim rejected

Published: (Updated: ) in Australian News by .

Melbourne woman Jeanette Clabassi once had the world at her feet as a ballerina, actress and model.

Jeanette Clabassi was born with an ultra rare condition called abdominal cocoon syndrome, which caused her to lose a drastic amount of weight over the years as her bowel was slowly strangled.

Melbourne woman Jeanette Clabassi once had the world at her feet as a ballerina, actress and model.

Then, two years ago, it all came crashing down when she almost died, was placed in a coma and diagnosed with a rare condition that is believed to affect just one in 300 million people.

Now, Ms Clabassi says she is in the fight of her life once again after she was rejected by the National Disability Insurance Scheme (NDIS) for funding to get the care she needs.

Ms Clabassi was born with abdominal cocoon syndrome, an ultra-rare condition where a fibrous membrane is wrapped around the small and large bowel.

The membrane doesn't show up on normal scans and is usually only discovered when the stomach is opened up surgically during a laparotomy.

The former model says she has been left severely disabled as a result of her condition.

Ms Clabassi grew up not knowing that the membrane in her stomach was slowly strangling her bowels.

But there were clues along the way.

Ms Clabassi always struggled to put on weight and began to lose even more over the years.

"I was a prima ballerina and I was very thin but I always looked after myself. I invested in my body well, I exercised daily. I don't eat junk food but I would eat and eat and eat," she said.

At one point, Ms Clabassi weighed just 29kg and she was admitted twice to anorexic wards by doctors who suspected she was starving herself.

Ms Clabassi says she is in desperate need of support from the NDIS, but her application for funding was rejected.

Then came a day in November 2017, when she was struck down with a fever and the pain in her stomach became so intense that she called a friend to take her to the hospital emergency department.

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At the hospital, doctors performed the first of seven laparotomies that Ms Clabassi would endure, opening up her stomach to see the membrane wrapped around her bowels.

Hovering between life and death, Ms Clabassi said a priest went as far as delivering her last rites.

"I went into the hospital and I nearly never came home. I was told that if I didn't go in that night I would have died in my sleep at home," she said.

"My bowel was so paper thin inside that if you were to touch it, it would just disintegrate."

Ms Clabassi was placed in a coma and would end up spending the next 10 months in hospital.

"When I came out of the coma I was unable to move, I was paralysed. I couldn't see and I was told I wouldn't walk again," she said.

Now, Ms Clabassi said she had been left severely disfigured and disabled by her ordeal, having finally had the last of seven major operations earlier this year.

She is severely vision impaired, lives with an ileostomy bag after part of her bowel was removed and suffers from chronic pain and sciatica.

Ms Clabassi is now severely vision impaired and lives with an ileostomy bag after part of her bowel was removed.

Ms Clabassi said she had finally been granted a disability support pension last month after a long battle with Centrelink.

However, after applying to the NDIS to get extra help and equipment around the home, Ms Clabassi said she was rejected last month.

"They are saying they can't classify it as being a permanent disability. Then what the hell is it? Is it the cold? Is it the flu?" she said.

"How is having an ileostomy, having a stoma and seven laparotomies not permanent?

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"I have had so many complications. I'm on permanent stool softeners. I have to wear adult diapers because I am incontinent. I can't see for the life of me. What is this, what more do they want?

"I need the NDIS for me to get better. If I don't get this NDIS I have got no chance of getting better.

"I still can't get out of bed. I need a monkey bar and certain equipment at home to be able to function.

"I need care at home, I need to be able to get around. I need to get to appointments which I can't get to. I have got to shop and cook for myself but I can't do anything because I'm half blind."

A spokesperson for the National Disability Insurance Agency (NDIA) told the agency was unable to comment directly on Ms Clabassi's case because of privacy reasons, but added: "It is important to note the NDIS was never intended to provide supports related to serious or chronic health conditions," she said.

"They remain the responsibility of mainstream services, including the health system."

Contact reporter Emily McPherson at

Source: 9News

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