‘I lost my hands to meningitis, here’s what you must know’

Tilly Lockey, who has two bionic arms

Tilly Lockey lost her hands to meningitis when she was a young child and now has bionic arms (Image: Craig Connor/ChronicleLive)

A woman who lost both her hands after contracting meningitis when she was just 15 months old has opened up about her experience after two people died following an outbreak of the disease. Tilly Lockey is an inspirational speaker, tech expert, model, and musician, and has more than one million followers across various social media platforms. Now she has shared her experience after two people – 18 year old Juliette Kenny, and a University of Kent student – died following an outbreak of the disease in Kent.

Speaking in a video on TikTok, Tilly detailed her own story, and what she believes people need to know about the illness. “I had meningitis B and survived, so in light of the recent meningitis outbreak, I thought I would share my story and some of the signs and symptoms to look out for,” she said.

“So, for those who don’t know, meningitis is the inflammation of the membranes around the base of the spine and the brain. I had it when I was 15 months old.

“The two most common ages to get it [are] when you’re a baby, or when you’re at university, like a university student. Personally, I had cold flu-like symptoms, [I] was also vomiting, and a transfixed state is one that I had as well.

“I was initially diagnosed with an ear infection off the back of these symptoms and sent back home, so the meningitis wasn’t actually treated. That’s why meningitis symptoms are scary, because it can just appear like cold flu, you could be sent home or misdiagnosed when really it could be something bigger.

“I was only rushed to the hospital again when my meningitis turned into meningococcal septicaemia strain B, and this septicaemia rash was sort of spreading across my body.

“I was rushed to the hospital. At that point they thought I was going to die, but obviously I am here, I was able to survive, but then did have to amputate both my hands. This is more of a septicaemia thing than a meningitis thing, but they can come together.”

Tilly explained she had received all her vaccinations, but at that time meningitis B wasn’t one of the conditions babies were routinely vaccinated against. Since 2015 it has been incorporated into the childhood vaccination programme, reports the Mirror.

She added: “So my advice to people would be to be on the ball. I had meningitis, I survived. Of course it had an impact on my life, but I still live a super, super-duper full life.

“Just stay safe, just be cautious, be aware. Just be aware of your own, like, personal hygiene and stuff, because that really does go a long way.”

What is meningitis?

The NHS describes meningitis as “an infection of the protective membranes that surround the brain and spinal cord”. It states that the condition can affect anyone, but is most prevalent in babies, young children, teenagers, and young adults.

The organisation cautions that meningitis can be extremely serious if not treated promptly, and can lead to sepsis, which can be fatal. It can also result in permanent damage to the brain or nerves.

It is typically caused by a bacterial or viral infection – bacterial meningitis is less common, but more severe, and it is this form of the disease the two people in Kent died from. Infections can be spread by sneezing, coughing, or kissing, and are usually transmitted by people carrying the virus or bacteria in their nose or throat, who are not sick themselves.

What are the symptoms of meningitis?

The NHS says symptoms of meningitis can develop rapidly and in any sequence. Someone with meningitis may not exhibit all these symptoms. They can include: