By Tom Midlane @GoldenLatrine
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Videographer / director: Dave Hare
Producer: Tom Midlane, Nick Johnson
Editor: Marcus Cooper, Jack Stevens
Rachael, 41, from Huddersfield, has neurofibromatosis type 1 (NF1), a genetic disorder which leaves her with large bubble-like lesions all over her face, neck, arms, back, tummy and legs.
The stay-at-home mum inherited the condition from her father, who died five years ago, but the lumps did not start appearing in earnest until she entered puberty.
She said: “My dad was a very private man, he never spoke about his neurofibromatosis, but I think he felt very guilty about passing it on to me. I think looking at me hurt him.
"Neurofibromatosis makes me feel very insecure and low on confidence, sometimes I can't talk to people and I feel that people don’t want to talk to me.
"I am very paranoid, but I think it has made me a better person when it comes to understanding other people’s difficulties."
Heckled by strangers in the street, one of whom cruelly called her a 'spotty bitch', Rachael’s confidence hit rock bottom.
She was even insulted when she was on holiday, with one couple mockingly saying she looked as if she had been bitten by a crocodile.
Rachael said: "I get quite a lot of remarks when I am out. When people make horrible comments, it really hurts.
"I either want to hurl abuse back, which isn’t really the best response, or I walk away and when I get home I get really upset. It can shut me down for weeks sometimes.
“But it’s not only me - my children have to deal with public comments and people staring at their mum - and they either want to fight back or they want to protect me, so it's really hurtful for the whole family."
Daughter Siobhan, 11, said: “When people make rude comments I look at them a certain way, because it’s not very nice of them. Every mum is equal, no matter what they look like."
Rachael feared that her neurofibromatosis meant she would never meet a partner who loved her for who she really was.
But after reconnecting with an old acquaintance, Mike, the pair fell in love and Rachael says he was the first man in her life to “treat me as human”.
The couple began dating in 2003 and married in a romantic ceremony in April 2013.
“I’d not met the right person until I met Mike. He has been an amazing support because he sees past my condition,” Rachael said.
"He sees me as a person and he makes me feel worthy. He always made me feel great and I have never felt the need to hide from him."
Mike, 46, a caretaker at a public school, says he has always been accepting of Rachael’s skin condition.
He said: "I noticed it when we first met but I am just one these people that 'you are who you are’.
“Her condition has got quite lot really and she worries, but I just try and reassure her. But it’s not a weekly conversation.
"I think it’s just if we are going out, she is really worried what she is wearing, how she feels, what she looks like and what people might think of her."
The couple live at home in Yorkshire with their children Logan, 6, Siobahn, 11, and James, 16. Rachael also has a stepdaughter Chloe, 21, from Mike’s previous relationship.
She has had laser treatment for her NF1 in the past and even convinced her father to have some treatment towards the end of his life.
However, there is currently no cure for NF1 and Rachael says her condition is continuing to worsen as she gets older.
She said: "I feel each pregnancy has brought it out even more. Hormones really do make it worse and when I look at photos from ten years ago, I am much worse now then I was then.
“The laser has helped me massively, but it has been four years since the last one.
"I would definitely want to have more laser treatment on my face before they get worse. I can cope with everywhere else but my face I can't because obviously that is the first thing people see."
However Rachael has refused to let her condition isolate her and she has now set up a Facebook page called Neurofibromatosis Our World, which has close to 500 members.
The group is intended to enable neurofibromatosis patients and their families to connect and talk about the condition, and to challenge the stigma that sufferers face.
Rachael said: “I set up the group firstly to help me accept myself, and remind me that there’s others out there facing the same daily struggles as me.
“I felt so alone before but I have made so many friends through the Facebook group already.
“But I also wanted to do this for my family - it’s not just me that struggles, it’s also my husband and my kids. If people hurt me then they hurt them too.”
Since neurofibromatosis is a genetic condition, Rachel and Mike are concerned that it could have been passed on to one of their children - but say Rachael’s experiences mean she is perfectly placed to help them live happy and healthy lives.
Mike said: “Having been through this herself with the lack of knowledge when she was younger, Rachael knows what’s right for the kids and what stages they would go through, but touch wood they have been all good so far.”
May is World Neurofibromatosis Awareness Month! For more information and support on neurofibromatosis visit the Neuro Foundation’s website: www.nfauk.org
People with neurofibromatosis or supporting someone with the condition can join Rachael’s group, Neurofibromatosis Our World, by visiting www.facebook.com/groups/278519335835327/