For busy mum-of-four Rachael Reynolds, even just leaving the house can be a struggle.
The 41-year-old from Huddersfield, suffers from neurofibromatosis type 1 (NF1), a genetic disorder which causes lumps to form all over her body.
Rachael inherited the condition from her dad, who died five years ago, but the lumps did not start to appear until she became a teenager.
She explains, ‘you can be born perfect and as you get older lumps pop out on your skin. Some people have it more severe, some people have it less severe.’
‘I have lumps all over my body. They started appearing on my face, my neck, my arms, my tummy and all over my back.’
‘I really can’t remember how old I was when I was first diagnosed. I think I was about 14 or 15 when I was aware of the lumps coming through.’
After years of struggling with her self esteem and enduring cruel taunts from strangers, the condition has taken it’s toll on Rachael’s ability to socialise.
She says, ‘sometimes I can’t talk to people and I feel that people don’t want to talk to me – I’m very paranoid.’
‘I get quite a lot of comments when I’m out. I either want to hurl abuse back, which isn’t really the best response, or I go withdrawn and quiet and deal with it when I get home. It completely shuts me down.’
‘It’s not only me that has to deal with it, my children have to deal with public comments and people staring at their mum. They either want to fight back or they want to protect me. It’s really hurtful for the whole family.’
Thankfully, Rachael has a brilliant support system in the form of her loving husband Michael.
Rachael explains, ‘in the past it dented my confidence with meeting people and love life. I had never met the right person until I met Michael. He has been an amazing support because he sees past that. He sees me as a person and makes me feel worthy. He always made me feel great and I’ve never felt the need to hide from Michael.’
In a bid to come to terms with her condition and stop it from isolating her, Rachael has set up a Facebook page for people suffering from neurofibromatosis.
She explains, ‘I have set up a Facebook group called Neurofibromatosis Our World.’
‘I’m hoping to meet quite a lot of people through that page. I want it to help other people, I want it to help my family, help my children through it and to help my children deal with it through meeting other people.’
But despite the improvements Rachael has made to her confidence levels, she is concerned that her condition is slowly getting worse.
Her husband Michael explains, ‘She’s worried all the time – she’s worried the condition has got worse since I met her. She worries what I think about her a lot. If we are going out for an engagement she’s really worried about what she’s wearing, how she feels, what she looks like, what people might think of her – but to hell with them! You are who you are.’
Despite Michael’s reassurance and the support of her children, Rachael is keen to undergo further treatment.
Currently there is no cure available for the condition, but there is the option to have laser therapy, which Rachael has had in the past.
She explains, ‘I feel like the lasers helped massively. I had quite a lot off the top of my back, off my chest and I’ve had a few off my face but it’s been four years since I’ve had it done.’
‘I definitely want to have more laser treatment on my face before they get worse. I can cope with them everywhere else but on my face I can’t.’
Due to the fact that neurofibromatosis is a genetic condition and doesn’t always present itself until later in life, Rachael and Michael admit that they are worried that it could be passed on to one of their children.
Rachael says, ‘my dad was a very private man. He never spoke about his neurofibromatosis. I think my dad felt very guilty about passing it on to me. I think looking at me hurt him.’
‘If one day we find out that any of the children have got it we will just take it one step at a time, deal with each situation as it arises and just be there to support them.’
Ultimately, despite her struggles, Rachael believes that neurofibromatosis has not only brought her family closer, but also made her better equipped to help others.
She says, ‘I think it’s made me a better person to understand other people’s difficulties.’
Watch the video above to find out more.
If you, or someone you love has neurofibromatosis then you can join Rachael’s group, Neurofibromatosis Our World.