Man living with rare condition that causes one half of face to shrink shares 'hardest part' about dealing with it

A man living with a rare condition that causes half of his face to shrink has shared the 'hardest part' about dealing with it.

Lukas Caldwell, 20, from Nebraska, US, was diagnosed with Parry-Romberg syndrome when he was just seven years old, after his parents noticed discolouration in his face.

Lukas Caldwell has Parry-Romberg syndrome (Instagram/@lukas.caldwell)

Parry-Romberg syndrome is a rare condition characterised by the shrinking of the skin and soft tissues in one half of the face.

In some very rare cases, both sides can be affected and some sufferers may also have impacted limbs.

The condition is usually diagnosed by the age of 10 and most people will experience symptoms before the age of 20.

The cause of Parry-Romberg syndrome is currently unknown, although some believe it could have genetic factors.

Caldwell - who goes by @lukas.caldwell on TikTok - documents his journey on the social media platform, educating others on the condition and sharing his experience with the syndrome.

Caldwell has spoken about the hardest part (YouTube/Good Morning America)

In an interview with Good Morning America, he explained the most challenging part of having the condition.

"You're treated differently by others based on your appearance whether you like to recognise it or not," he said.

"And that's just caused me to internalise certain beliefs. I have social phobia, I have anxiety and all those types of things.

"And it's not necessarily anyone's fault, it's just kind of how it is.

"The biggest thing what I've gone through is just the gradual change over time is something that's hard to get used to.

"I look very different at age eight through to 10.

"You would never just get used to how you are, develop like a sense of identity because you are constantly different... treatments, different progression of the disease."

Caldwell after one of his surgeries (Instagram/@lukas.caldwell)

Caldwell - who said he was always bullied as a child and called 'half face' because of his condition - has had multiple surgeries to help reconstruct his face, including on his jaw as well as plastic surgery.

"I couldn't get any reconstructive procedures done until I was 18 because they don't want your face to keep growing," he explained.

"The biggest thing I want people to take away is that you shouldn't judge others based on their appearance because I just think that's superficial and shallow.

"It just isn't how you should go about interacting with people.

"Something I've come to realise is that everyone knows something you don't. And that's just so valuable."