Did you catch House of Extraordinary People on Channel 5 the other week?

Rachael lives with a genetic disorder called neurofibromatosis

Rachael lives with a genetic disorder called neurofibromatosis

The TV show followed nine people living under the same roof for 10 days, confronting public prejudices and facing their fears. Each person lives with something that makes them different, and the show gave an insight into what it is like to live with certain physiological differences.

Rachael Reynolds suffers from neurofibromatosis, a a genetic disorder that causes tumors to form on nerve tissue.

Her father had the condition, and so Rachael was always aware she may one day start showing symptoms, but since her parents didn’t really speak about it, she only wondered. It wasn’t until she started puberty that the lumps began to appear.

Rachael told Female First: “I had cafe au-lait marks (which look like coffee coloured birthmarks) and freckling under the arms and groin area from birth - more or less. I always thought they were birthmarks - my Mum and Dad didn’t know much about the condition.

“Even though my Dad had it, they didn’t suspect it. I started getting lumps from age 14 and then I knew.

“It started to knock my confidence and made me self-conscious. I started to cover up - not getting changed in front of my peers at school, in changing rooms at swimming or trying clothes on in town.

“I was scared because I’d seen my Dad with it, and didn’t know how it would affect me.”

Although neurofibromatosis is a visible condition, there is more to it than what meets the eye. Rachael says it affects many things - not just appearance.

“It can be painful, and can cause low vitamin D - which in my case it does. It can also cause fatigue.”

What it isn’t, though, is contagious. It’s genetic, so is passed down through generations.

Rachael set up a group a few years ago, where she’s met other people who live with neurofibromatosis.

“I started Neurofibromatosis - Our World, as I wanted to help others after having a lot of information from Nerve Tumours UK. Since beginning the group, I have met people near me who have the condition and aim to meet even more. I had a video go on Youtube, which prompted more members, then it went to the papers… So it has become a place where we can support each other.”

The programme had great reviews, with many people saying how moved they were by the stories of the people featured on the show.

Having a lived her life feeling constantly judged, Rachael went on the show with an open mind, hoping to take away some positives from the experience.

And she did exactly that. Rachael says that as well as learning a lot, she also felt inspired to do more for people who struggle with similar challenges to her own.

She says: “I learned that no-one is perfect in their thoughts, and that we all judge sometimes - in one way or another. It’s so easy to look at others and be judgemental.

“But some people are not looking to be rude - they might be looking because they want to know what it is and they’re curious, but scared to ask.

“There will be some people that are thinking cruel and negative thoughts about me and others, but I think that is the minority - I hope anyway.

“It’s also made me want to do more for those with differences and speak out more - raise awareness. It’s ok to look different - and just because we look different, it doesn’t mean we are.”

Rachael has achieved a lot of personal goals in her time but gaining the confidence to go from fearing leaving the house to talking about her condition on national television is certainly one of her most commendable.

She added: “Speaking out in the house was easy - I wish it was always like that. It was easy as every one of us looked different - not one person judged me. Everyone made me feel comfortable around them and were inspirational in their own way.

“I am more outspoken and feel more confident since being on the show. I still have my down days, I still sometimes look in the mirror and hate it, but I remind myself how far I have come. It has changed a lot of people that know me - they’re more understanding towards me and the support has been amazing.”

Even though Rachael has inspired many people with her story, she still has her own personal inspirations, too.

Most of us will know Katie Piper. She was attacked with acid by her ex-boyfriend and an accomplice, causing major damage to her face and blindness in one eye. After undergoing surgery to restore her face and vision, Katie gave up her anonymity to increase awareness about burn victims, and promote self-love and self-acceptance.

Rachael says this message spoke to her, making Katie one of her role models.

“I love Katie Piper - I find her amazing and beautiful in her own right. I love how she speaks out to others, helps them deal with their differences, and I hope I will have more confidence in the future to be like her.

“I loved every single person in the house - they were all amazing and inspirational too.

“Harnaam has lots of self confidence to speak out, and I really want to be able to do that. Everyone in the house has played a part in how I feel about myself, as well as the messages of support I have received from the public about the show.”

Of course, low self-esteem doesn’t just occur amongst people who ‘look different’. In a time where social media is everything, even the people who might portray themselves to live a ‘perfect’ life struggle with confidence.

Rachael urges us to “go out there and be yourself! Beauty shines from within - show people the real you!” Her three mottos which she lives by, to help her day-to-day are:

“1) Why try to blend in when we were born to stand out? - From the film Wonder which I found amazing.

“2) Just because we look different, doesn’t mean we should be treated any different.

“3) Everyone is equal.”

To find out more about neurofibromatosis, visit the NHS website: https://www.nhs.uk/conditions/neurofibromatosis-type-1/

If you missed the show, you can watch House of Extraordinary People over on My5.tv


by for v5.femalefirst.co.uk