'I have thousands of tumours over my body but I'm not contagious'
A mum has shared an insight into her life with a rare condition which means she has thousands of tumours all over her body and makes sex and even showering painful.
Rachel Potter, 34, from Belfast, Northern Ireland, is living with an illness called neurofibromatosis type 1 (NF1), a genetic condition that causes tumours to grow along the nerves.
While the tumours, some as big as a 50p coin, are usually non-cancerous (benign) they can cause a range of symptoms.
Rachel has the benign tumours all over her back, on her head and face, and in her brain and says she finds it painful even to lie down and sleep.
She is unable to work due to her condition and says the tumours cause so much discomfort she has to take up to seven pain medications each day.
"It's an extremely painful condition - the bumps are very sore," Rachel explains.
"The tumours can appear anywhere.
"It can be difficult and embarrassing when they're on your face. I avoid going out because of the things people say."
NF1 is caused by a gene mutation and affects 25,000 people in the UK, according to Nerve Tumours UK.
The tumours, usually non-cancerous, grow all along the nerve pathways.
Rachel has them all along her spinal cord, and in all her organs - ranging in size from a pin head to a large peanut.
She was diagnosed aged five after her mum had her checked out because she had birthmarks, known as café au lait spots, all over her body.
The painful lumps - called fibromas - started appearing when Rachel reached puberty at age 12, and she gets up to 20 new ones each month.
She says once they've popped up they don't go away and that they increased when she was pregnant with her son.
"They just appear out of nowhere - sometimes I feel an itch for a couple of days before and sometimes not," she explains.
Living with the condition can make some every day tasks difficult.
"It's very uncomfortable - it's like a stabbing pain all over," Rachel explains.
"I rarely get much sleep.
"And I have a 60% chance of getting cancer because of it - that's very scary."
The cancer risk means Rachel can't go out in the sun and she has to have yearly scans.
Rachel is also unable to see much out of her right eye because of a lump which doctors can't remove without risking the sight in the eye.
In 2022 she had to have some of the tumours taken out of her mouth, when it became too painful to eat or brush her teeth and some days she can hardly walk because tumours on the soles of her feet are too sore.
While Rachel enjoys a bath she can't use the shower because the water hitting the tumours is too painful.
Rachel met her now husband, Daniel, 34, 12 years ago when they were at college together.
"Daniel asked about the bumps on my face about a month after we met and I said they were tumours," Rachel says.
"He went away and researched it. He just wasn't bothered by it the way other people can be.
"We were good friends at first but there was always a spark between us."
But Rachel's condition means she can find hugging or even having sex extremely uncomfortable.
"We communicate really well about things like cuddling and sex which can be very painful for me," Rachel says of her partner.
"He's very encouraging and tries to help me not to feel ashamed of myself."
The couple got married in 2016 and had their son, now seven, who has also been diagnosed with NF1, with Daniel now a full-time carer for them both.
There is no history of NF1 in Rachel's family, so she thinks the gene mutation started with her and was passed to her son.
"He has lots of the cafe au lait marks and the bumps," she explains.
"I've always let him touch my tumours and spoken about them openly with him and he'll be able to talk about it in his own time."
While Rachel says strangers often comment on her condition, asking her if she has the monkey pox, or chicken pox, or saying she looks like dot-to-dot, she's hoping her son won't be as impacted.
"I try not to worry about him - if people can't accept him that's their problem," she explains.
"We're not monsters - we're just ordinary people.
"And we're not contagious.
"We want people to ask us about it, but in a kind way."
Additional reporting SWNS.
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