Growing up in the 1980s and 1990s, Jodi said people had less of an understanding of visible skin differences.
“Children were pulled away from me during swimming lessons or on a beach holiday, because their parents were unaware of ‘what is this?’ on this girl’s skin.”
She said she was three years behind in school after having taken time off for surgery, which left her feeling “isolated”.
Aged 16, she was told by a consultant at Great Ormond Street Hospital her condition was called CMN and there were other people younger than her with the condition, so her family and her agreed to talk to them.
“The phone started ringing and hasn’t stopped since. And that was how Caring Matters Now was formed 28 years ago,” Whitehouse said.
“The support structure is massive now, with 900 families,” she added.