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Father Battles Elephant Man Disease; Set To Have 41 Operations

Update Date: Feb 24, 2017 08:50 AM EST
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Brian Richards, 33 has Proteus syndrome, which is an ultra-rare condition where one's bones and organs won't stop growing. It was made famous by Joseph Merrick who appeared in a UK freak show and inspired the film "The Elephant Man." Angie, 34 said the 'elephant man' condition doesn't scare her.

Richards has undergone 41 surgeries to help improve his quality of life. Toe amputations, bone removal from his knee and most recently he had a lung removed to helps stop his bones from growing. His toes have just grown back and have a second kneecap forming above the original one, making it difficult for him to walk.

Richards was diagnosed with Proteus syndrome when he was 3-years-old. Only one in a million are born with this condition. During puberty his condition amplified and his bones grew at an increased rate.

Daily Mail reported there are only 120 documented cases. Surgeons tried to destroy the growth plate in his knee but it grew back.  

Aside from physical problems he also suffered from mental health issues. He was diagnosed with depression as a teenager after being bullied in school. His classmates called him "Frankenstein's monster."

According to The Sun Proteus syndrome is a condition that leads to disproportionate growth of tissues such as skin, bone, vascular and fatty tissue. The genetic condition is not passed on from parent to child but is caused by a sporadic mutation or change in a gene called AKT1.

Richards who is from Dover in Delaware, doubted he would ever find love. But in 2010 he met his wife Angie online. Now they are approaching their fourth wedding anniversary, they are aware he could die at any time.    

"Before her I didn't have a lot of emotions. I had to shut down to protect myself but now I'm learning to be able to talk about problems and tell her when I'm in pain," said Richards.

There is no cure but to manage the symptoms of the condition treatment is available, such as surgery that can help reduce the amount of bone and physiotherapy can help with movement.

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