Rue's story: Getting involved in research

Rue, 17, has Neuromyelitis Optica, a rare autoimmune condition affecting 1 in 5 million people. It can be characterised by relapses (attacks) of the optic nerve and spinal cord, which can cause vision problems and sight loss. Rue is taking part in a clinical trial to see whether a new drug can help reduce relapses that occur in her vision. Here she shares her story:

“I’ve got a condition called NMO. It’s an immune system disorder that affects my optic nerve and I’ve lost sight from it. For other people with NMO it can affect their spinal cord or their brain, and that makes them feel sick.

“Last year when I first came to GOSH I had better vision, and I could read things in font size 18. But now, as my condition has progressed, I have to read in font size 24. I have a voiceover on my phone to help me read and the text on my screen is really big. I use a magnifier for Snapchat and Instagram.”

Since her diagnosis, Rue has been keen to get involved with research and is taking part in a clinical trial where she receives monthly injections of a medication to reduce the relapses that occur: “I want to do everything I can; not to fix my vision as you can’t fix this type of condition, but to try to make it easier for me and help prevent it from getting any worse.

“Research is important to me because you can find out different ways to cure conditions, diseases, disorders or prevent them from getting worse. It helps other people too – you can give your views and advice on whether you think it's good or not.”

Cheryl Hemingway, who is Rue’s Consultant Paediatric Neurologist at GOSH, adds:

“Rue is a delight to care for. She had a normal life before getting her diagnosis relatively recently and now is now having to make lots of readjustments to losing her vision. We discussed the clinical trial and Rue was keen to take part as it seemed like the best opportunity to get the best new drug.

“For rare conditions the only way of progressing the field is through clinical trials and working collaboratively to advance patient care.”

Rue has been coming to GOSH for over a year, regularly seeing teams in the ophthalmology and National Institute for Health Research (NIHR) GOSH Clinical Research Facility.

“I love coming to GOSH because it's better than going elsewhere where they do not really know about the condition. Here they are very specialised and have all the equipment and scanning machines, and can give good advice. They let me and my mum both know what's going on, rather than just telling us individually what’s going to happen.”

Like many teenagers Rue is a big user of social media, and even has her own YouTube channel, which she decided to start after her diagnosis:

“I just wanted to have fun, make people laugh, and it’s something that I could do myself. I have a passion for photography but since my vision has decreased it’s hard to practice that skill. But with vlogging its quite easy, I can just talk (to camera) about what I do in my day-to-day life. I’ve done a few different videos – I love to travel so I’ve done a couple of travel vlogs, as well as funny reaction videos!”

Find out more about research at GOSH.