Charmaine, from, Trinidad, has always had the condition but says the growths were largely unnoticeable until her second son Osiris, 15, was born.
After the birth the number of tumours increased rapidly, and two surgeries have been unable to stop them forming.
The devoted mother has been left too scared to attend her sons’ school for any reason for fear they will be bullied.
She is also self-conscious about going outside as children sometimes run away from her.
Charmaine, who is desperate to seek relief from the condition, is now turning abroad to the UK, US and Australia to try and find anyone who can help her.
‘I have had the condition since birth, but it started getting a lot worse about 15 years ago,’ Charmaine said.
‘It was very small and did not show up much until after the birth of my second child. Then after he was born it got a lot worse.
‘It’s very painful, especially my leg. Right now when I squeeze the bump something like a large blackhead comes out.
‘Sometimes if you do that they can become infected. Once my entire finger swelled up and it was very painful. I have to be very careful.
‘I have one of the most serious cases of neurofibromatosis in the world.
‘Here in Trinidad there is no help for me at all. I have had two surgeries to try and clear some of the lumps but they have swollen up again.’
Charmaine says the condition has made her life incredibly difficult. She was in an 18-year marriage but she separated from her husband three years ago.
Looking after her two sons Caleb, 19 and Osiris, but says it is financially tough as no one will hire her.
Although she tries to remain in good spirits, she says people running away and making comments does get to her.
She has also been horrified by suggestions she should commit suicide.
She said: ‘I get a lot of stares if I go out and a lot of people bring me down.
‘I see myself as a beautiful person and I try not to let people affect me. I can’t let myself be affected by everyone’s opinions.
‘I’m a happy person. At the end of the day I do everything that a normal person does.
‘Some people with neurofibromatosis might not feel able to carry on but I do.’