Neurofibromatosis type 1 causes Rachel Potter to break out in painful tumours
A Belfast mum says normal things like showering and having sex are extremely painful due to a rare condition which has left her with painful tumours all over her body - inside and out. Rachel Potter, 34, has thousands of non-cancerous tumours due to an illness called neurofibromatosis type 1 .
“It can be difficult and embarrassing when they’re on your face. I avoid going out because of the things people say. They just appear out of nowhere - sometimes I feel an itch for a couple of days before and sometimes not. Rachel, from Belfast, has them all along her spinal cord, and in all her organs - ranging in size from a pin head to a 50p or large peanut, she says. She was diagnosed aged five after her mum had her checked out because of cafe au lait birthmarks all over Rachel’s body.
Rachel can’t see much out of her right eye because of a lump which medics can’t remove without risking all the sight in the eye. She had to have some of the tumours taken out of her mouth, in 2022, when it became too painful to eat or brush her teeth. They got married in 2016 and had their son, now seven, who has NF1 too. Daniel is a full-time carer for them both. Rachel said: “Daniel asked about the bumps on my face about a month after we met and I said they were tumours, then he went and researched it - he just wasn’t bothered by it the way other people can be.
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