PURE AGONY

Desperate man with stinking ‘cauliflower feet’ begs doctors to amputate as he’s in so much pain

A DESPERATE man has begged a doctor to amputate his “cauliflower feet” that give off a vile rotten cheese like odour.

Jeff Ortega, 30, has been suffering from a Proteus Syndrome which is a rare condition that has caused his feet to swell to an enormous size as well as emitting the pungent smell. 

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Jeff Ortega has opened up about his rare condition to raise awarenessCredit: Quest Red
His feet are so afflicted he cannot walk more than several stepsCredit: Quest Red
The condition means he has to keep them clean or a horrible smell is given offCredit: Quest Red

Almost all his life, Jeff from New Jersey, USA, has battled an agonising and humiliating condition that has left him struggling to walk and begging doctors to amputate his feet.

Proteus Syndrome – also known as Elephant Man’s disease after the famed Victorian sufferer – is very uncommon. 

It means the bones, skin and other tissue don't stop growing.

In Jeff’s case his feet have swollen massively, makes even the simplest of tasks most people take for granted virtually impossible.

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He explained: “My feet are both heavy, especially the left foot. 

“It is very challenging to try to lift it and to try and manoeuvre it, because I end up falling. It’s very difficult."

But over the past few years, Jeff’s condition has worsened, meaning excruciating pain has been his everyday reality.

His plight is featured in a remarkable new series called My Feet Are Killing Me.

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He said: “I can walk no more than 10 steps. After that, the pain starts triggering. It feels like I’m walking on glass.”

I can easily have a lot of smell...the smell is like rotten cheese

Jeff Ortega, Proteus Syndrome sufferer

Because of the size of his feet and the pain he experiences, Jeff is mostly confined to a wheelchair, and wearing shoes is virtually impossible.

Yet other than the pain, his feet are a huge source of embarrassment and shame. 

He said: “I can easily have a lot of smell. The smell is like rotten cheese."

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Having consulted multiple doctors, Jeff is at a loss, and has given up on his dream of becoming a professional football player. 

But In one last attempt to get help, Jeff visits Dr Brad Schaeffer’s New Jersey clinic to see if he can give him a better quality of life. 

After removing Jeff’s socks, Dr Schaeffer is blown away by the size of Jeff’s feet, the like of which he hasn't seen in his professional life.

Dr Schaeffer says: “The tissue does almost balloon out. It looks like cauliflower. Some of Jeff’s toes look like golf balls.” 

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After undergoing a staggering 11 surgeries, Jeff’s no closer to having the quality of life he deserves, and Dr Schaeffer sympathises with him.

What is Proteus syndrome?

Proteus syndrome is a condition that leads to disproportionate growth of tissues such as bone, skin, vascular and fatty tissue.

It is a genetic condition but it is not passed on from parent to child – rather it is caused by a sporadic mutation or change in a gene called AKT1.

The AKT1 gene is responsible for the growth, division and death of cells and the mutation causes the cells to overgrow.

Proteus syndrome is a ‘mosaic’ condition, that is, some cells contain the mutated gene but others do not, which causes the overgrowth to affect only parts of the body.

Symptoms:

The main feature of Proteus syndrome is asymmetrical overgrowth of parts of the body.

This overgrowth is present at birth but may become more noticeable over time.

In addition to overgrowth, children with Proteus syndrome may have distinctive facial features with a long face, low nasal bridge, large nostrils and downturned outer part of the eye.

Some children have seizures, vision problems and learning difficulties.

Treatment:

There is no cure but treatment is available to manage the symptoms of the condition.

Surgery can help reduce the amount of bone and physiotherapy can be done to help with movement.

Psychosocial support is recommended for all children and young people with Proteus syndrome as the overgrowth affecting some areas of the body can lead to unwanted attention and self-consciousness.

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“You’ve been through it, my friend,” he says. 

But Dr Shaeffer also surprises Jeff with a brand new, custom made pair of sandals – his first pair of new shoes for years  – which will help him walk about more comfortably. 

Jeff said: "I’m blown away. It feels like a dream come true, honestly. They feel amazing."

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Jeff has been so frustrated with his condition he has asked for amputation
Jeff struggles with his footwear
  • My Feet Are Killing Me airs at 10pm on Tuesdays exclusively on Quest Red and dplay.
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