By Haziq Qadri @Haziq_qadri

A RARE genetic mutation has caused a man’s leg to swell to a debilitating 100kg (220lbs) - more than five times its normal size

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Videographer / director: Aravind Kumar
Producer: Haziq Qadri, Nick Johnson
Editor: Sonia Estal, Ian Phillips

Arun has been forced to live in a 10 by 10 square foot room due to the effects of segmental overgrowth syndrome

Arun Rajasingh, from Chennai in southern India, was diagnosed two years ago with segmental overgrowth syndrome. 

The condition has affected him since birth but has worsened over time - leaving him virtually housebound for the last five years. 

The 34-year-old is now raising funds online to buy a customised wheelchair and a van to help him get around his home city. 

Arun said: “Initially my condition was not affecting me much. But once I reached the age of 25, the weight was too much for my body to handle.

The disorder has affected only part of Arun's body
Arun's right leg weighs 100kg, five times its normal size

"It was slowly and gradually increasing. It made me immobile and I was not able to move and do my usual activities.

“My life is restricted to one room only. It’s a 10 by 10 square feet room and I mostly lie on the bed.”

Segmental overgrowth describes any abnormal growth which affects only part of the body - in Arun’s case this ‘regional gigantism’ is in his right abdomen and leg. 

As a youngster Arun was able to attend regular school - but was targeted by bullies, who nicknamed him ‘elephant’ due to the girth of his leg.

Arun is hoping to raise money to buy a wheelchair and a minivan for mobility

He said: “People used to make fun of me. For them I was different and they would call me a ‘boy with an elephant leg’.

"My brother and I studied in the same school.

“I used to chase away the students. But I always failed. Then my brother used to beat them up for calling me an elephant.”

Doctors have suggested that Arun consider amputation

Despite his rare condition, in 2006 Arun started his own IT firm in Chennai - but his deteriorating condition has forced him to work from home with his sister. 

He said: "I can’t go to office or talk to my clients. My condition has affected my work badly. 

"My business was growing and then it started falling down as my health was not right.”

Arun’s condition left a number of Indian doctors baffled and as a 15-year-old he travelled to the US for treatment - but returned home following the death of his mother.

As a child Arun was ridiculed by his classmates for his disorder

He said: “The doctors said amputation is the only possible solution. But I didn’t want to lose my leg. I wanted them to treat it. 

"When someone has a problem they don’t want their body to be replaced. They want their body and they want that particular condition to be fixed.

Arun who started up his own IT firm in 2006 has seen business decline due to his lack of mobility

“My mother died two days after I reached US, and that was a very bad time. I was not concerned about the treatment as I was very close to my mother.”

Doctor N.K. Narayanan, consultant endocrinologist at the Apollo Hospital, has been Arun’s doctor for the last three years.

He said: "Arun has developed a genetic problem meaning there is a mutation in the genes which has predisposed him to have a very asymmetrical growth meaning one part of the body is growing more than the other part. 

"We call it segmental overgrowth syndrome. It is a very rare condition.

The condition grew worse for Arun when he turned 25

“His mobility is gradually more restricted, compared to how he was before. Unfortunately so far there has not been definitive treatment for this condition.”

Arun is now dreaming of raising enough money to buy a wheelchair and minivan to increase his mobility - and enable him to visit his mum’s resting place.

He said: “The first place I will visit is my mother’s graveyard. So that is where I will start my journey again and then I would be meeting my friends. And then life would be normal.”

To donate to Arun’s fundraising campaign, visit: 

www.gofundme.com/ArunMobility (international) or 
https://milaap.org/campaigns/movement_ceo (India)