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Belfast woman has hundreds of tiny tumours of face and body

By Laura Abernethy

A Northern Ireland woman has spoken movingly about her ongoing battle with excruciating pain, caused by hundreds of tiny pea-sized tumours growing all over her face and body.

Every day Noreen Steenson wakes up to a new lump, caused by ultra-rare and incurable neurofibromatosis (NF) type 1 - the result of a genetic mutation, which means nerve tissue grows uncontrollably.

Despite having operations to remove the tumours almost every year since she was 17, they continue to grow everywhere - even between her fingers and toes.

Noreen (43), from Belfast, who is in too much pain to work, said: "I never know what it will be like when I wake up. There's almost one new lump every day, but I've learnt to take each day as it comes."

Despite having developmental problems as a young child, it wasn't until she hit puberty that the lumps started to appear everywhere.

Noreen explained: "Throughout my life, my development was slow. I was about two before I learnt how to walk and I didn't grow any teeth until I was over two.

"I didn't have many lumps until I hit my teenage years and puberty.

"I was lucky that my GP in Belfast knew about the condition, as I was only the second sufferer recorded in Northern Ireland."

Soon the lumps started to appear all over Noreen's body, and by the time she was 17, she had her first operation to remove them from her right hand, making it difficult to move.

Sadly, as there is no cure for the condition, Noreen constantly needs to check on the lumps and requires surgery almost annually to remove some from the most badly affected areas.

"It does get worse and there is a risk that any of the tumours could turn cancerous," she added.

"I am at high risk of breast cancer, as they could mutate there. I take each day as it comes.

"I am in agony at the minute, because they are all over my feet. It is difficult to walk, because they are covering my soles and in between my toes.

"Any pressure on them is very painful.

"I'm also having investigations, because I'm worried they are developing on the inside of my throat, which is dangerous and uncomfortable."

Unfortunately, the tumours on Noreen's face and arms have also led to cruel taunts from strangers.

"Sometimes I can't face going out of the house," she added.

"I have lived by myself, with my 15-year-old Yorkshire Terrier, Becks, since my mum Muriel died from a heart attack seven years ago.

"It's easier just to stay indoors, as my face is covered in lumps and people stare at me and make fun of me.

"A few years ago, I was buying something at a chemist and the woman asked me to put the money on the counter. She didn't want to take it out of my hand. I think she thought she would catch something.

"It left me in tears. People can be so cruel.

"I have had it all my life, so I am used to it, but it is still upsetting and it does hurt."

Noreen has a lot of support from friends and other sufferers, though, who she has met online.

She said: "I have been going to a local day centre for adults, two days a week, for 16 years. They have been so helpful throughout everything. It is a safe place, where no one judges me and I can just be myself.

"Meeting people online has also really helped as it's made me realise I'm not alone. We go through similar problems.

"We give each other advice, based on how we have coped with situations. It is a lifeline."

Belfast Telegraph


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