BUBBLE WRAP
Mum’s pregnancy triggers flare-up of rare disease neurofibromatosis, leaving her covered in bubble-like-tumours
Charmaine suffers from neurofibromatosis, a genetic disorder that causes non-cancerous growths
A MUM-of-two has been left covered in bubble-like tumours after pregnancy caused a flare-up of a rare disease.
Charmaine Sahadeo suffers from neurofibromatosis, a genetic disorder that causes non-cancerous growths.
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The 38-year-old has always had the condition but says the growths weren’t obvious until the birth of her second son, Osiris, now 15.
Now, she has thousands of tumours covering her face and body, and three giant growths that engulf her right leg.
Charmaine, from Chaguanas, Trinidad, has had two surgeries to remove the bumps, but none were able to stop their growth.
Desperate to seek relief from her condition, which has left her too self-conscious to go outside, Charmaine is now seeking possible treatments in the UK, US and Australia.
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“I have had the condition since birth, but it started getting a lot worse about 15 years ago,” she said.
“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.
“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.
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“In all I think I have thousands of lumps. On my face and head alone there are probably three thousand or more. It looks like my skin is a strange bubble wrap.
“It is the ones by my eyes that concern me the most.
“The doctors say they could remove them to stop them blocking any vision but I am too afraid of the risk to my eyesight. I really worry something could go wrong.”
Charmaine said her condition caused the breakdown of her 18 year marriage three years ago.
She has struggled to find work but still looks after her two sons Caleb, 19 and Osiris.
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And she faces cruel taunt from strangers on a daily basis, with one person even suggesting she should commit suicide.
“I get a lot of stares if I go out and a lot of people bring me down,” she added.
“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.
“Some people do say some horrible things. Some people, especially children, get scared of me and run away.
“One person even told me that if they were in my position they would kill themselves.
A GENE MUTATION THAT CAUSES TUMOURS TO GROW ON THE SKIN
Neurofibromatosis Type 1 is caused by a gene mutation and causes the growth of tumours along the nerves in the skin, brain and other parts of the body.
It affects around one to 25,000 people worldwide with varying degrees of severity.
Diana Haberkamp, executive director of Neurofibromatosis Midwest, said: "People could live with this condition if they weren't treated so badly.
"Any tumour removals even if it's only a few can make a person feel emotionally much better and happier about themselves.
"Some of our community have struggled to find work and have been told that they should be in the circus or freak show, which is horrible.
"Pain management is also one of main problems of NF, there are people who suffer due to tumours under the skin that aren't visible, which can lead to limb loss and a loss of eyesight too.
"Specialist treatment is really important as no two tumours behave the same, they can wrap themselves around the organs and it takes a lot of experience to understand them.
"We dream of a day when we find a cure, but until then we want people to have a concept of NF and understand issues caused by the condition."
“But I’m a happy person. At the end of the day I do everything that a normal person does. How could I think about doing anything to harm myself?
“I cannot work because nobody wants to hire me. And I cannot walk far or stand for a long time as the weight of the all the growths is so great and it gets painful.
“Financially it gets very difficult sometimes.”
Charmaine doesn’t to go to school events with her children as she knows they find it difficult.
“My sons are very loving children and I am very proud of them,” she said.
MORE ON NEUROFIBROMATOSIS
“But sometimes they are shy to bring friends home.
“I don’t want everyone talking about me to them, and I don’t want people to say mean things to them, so I do not go to school functions and I always talk to teachers on the phone rather than go to see them.
“I do not go out if I do not have to, but I do go to the shops and to other places I need to visit.”
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