Mandy Sellars, 32, from Lancashire, suffers from Proteus syndrome, a condition also thought to have affected the “Elephant Man”, Joseph Merrick.
Although she was born with abnormally large legs and feet – which continue to grow – her body is of average size.
Doctors may have to amputate in the future, but Ms Sellars says she wants to raise awareness before it happens.
Proteus Syndrome is only thought to affect about 120 people worldwide, which ensures Ms Sellars receives some stares in public.
I quite fancy having a go at snowboarding actually, maybe paragliding or white water rafting would be wonderful
“I expect people to look – I think that’s quite inevitable because I would if I was in their position – but a smile can bring so much to one person,” she said.
She told the BBC of her relief at finally being diagnosed with the condition in May 2006, which allowed her to meet other sufferers.
“I wanted to belong,” said Ms Sellars.
“I wanted to find other people that had the condition, and to be able to relate to them and them to relate to me and know what it’s like to live with this condition and how different it is.”
Mandy was born with oversized limbs
Proteus Syndrome is an extremely rare condition which involves atypical growth of the bones, skin, head and a variety of other symptoms.
The name comes from the Greek god Proteus who could change his form.
There is no known cure and if Ms Sellars limbs continue to grow – her feet are 16ins long while her legs are 35ins in diameter at the bottom and 28ins at the top – doctors say they will have to amputate.
“I have goals for when that does happen,” she added.
“Why not? It can be a different life. It could be a more adventurous life. Things I can’t do now I might be able to do then.
“I quite fancy having a go at snowboarding actually, maybe paragliding or white water rafting would be wonderful, it really would. So you never know – watch this space.”