Post date: 
Friday, 11 January 2019
Rachel with her husband and two children

What drove Rachel Clements to choose to run this year’s iconic London Marathon to raise money for RNIB?

It was a day that Rachel would never forget. “I was sat in work and I noticed a shadow appear in my dominant eye, as part of the condition that me and my family have. I went to my local optician and they sent me to the local eye hospital. I was diagnosed with a retinal detachment, so I was straight into surgery to have it reattached.

Over the next 18 months she endured a number of operations, but nothing worked and eventually, she says her “eye gave up” and the only other option was to have it removed.

Stickler syndrome

It was a difficult time for her. Especially as this was part of a bigger condition she had called Stickler syndrome. The condition, a connective tissue disorder, means she doesn’t create the collagen and the connective tissue correctly to what oversees a lot of your body. “So it affects my eyes, my hearing, my joints – it’s something that I’ve grown up with. Something I have come to terms with throughout my life really thanks to my mum, who has it as well, and bringing the children up to understand and to appreciate what that means for us.

“I’ve got two children, two boys, a 16-year-old and a soon to be 13-year-old. Both have inherited the Stickler’s gene as well. My eldest is quite severely sight impaired, thankfully my youngest has got sight loss, but not as extreme.”

Leaving her job

The condition has as you can imagine affected her life, especially at work where her previous employer was unsympathetic with her situation.

Rachel is unsure whether it was because it was something her employer had never experienced. She was also having a lot of time off work between numerous operations and when she did return to work the assistance wasn’t fully there.

“It was a mutual decision really that it wasn’t the best place for me to be. That dropped my confidence quite a bit, I’m not going to lie, I was facing what I was facing anyway and then to have that happen on top of it. It made me feel like I wasn’t going to be able to go out to work and provide for my family and still have my own independence."

Things changed when her local vision expert from her local Specsavers put her in touch with RNIB. She was given advice on enlarging everything to using a tablet and her phone. “It gave me a bit of confidence that I could then go back into the workplace and there were things out there to help me so I could do just as good a job as anyone else in my position.”

Running for Team RNIB

Rachel now works as a data analyst for the Office for National Statistics. “I’m a civil servant and they’ve been amazing, everything is in place. I’ve got visually impaired keyboards, larger screens, all the programmes that I need on the system to be able to access their systems in an effective way. So, they’ve been brilliant.”

As a thank you to RNIB, she will run the Virgin Money London Marathon. Her training regime is going well. “I run with my husband as my guide runner and he ran the 2018 London Marathon, so I’m in as good hands as I can be really.

“He’s really good and can make sure that I’m not hindered visually and pointing out of all the things that are in my way.”

Her aim is to raise over £2,000 for RNIB. Her husband raised £2,500 and she is determined to beat that figure. “I’m hoping that if I could get over the £3,000 mark I will be very, very pleased,” she adds.

Ultimately, she wants to show that sight loss is no barrier to achieving anything you want to achieve and that people can fulfil their dreams.

She says:

I really do want to thank RNIB but I also want to show my children and show others like me that it doesn’t define you. Sight is such a minimal part of life, yeah it’s a big part of life and you can do a lot with your sight, but it doesn’t mean that you’re dispensable if you haven’t got it.

“If I could do that for just for one person, especially my children, then I’m happy that I’ve succeeded in my role and what’s gone on with my life has helped to inspire someone else.”

Help Rachel reach her target

Rachel is running the London Marathon for RNIB on 28 April and you can donate at

This article originally appeared in the Winter 2019 edition of Connect Magazine.