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.

In a heartfelt revelation, Tilly Lockey, who lost both her hands to meningitis as a toddler, has stepped forward to share her personal journey amid a recent meningitis outbreak in Kent that claimed the lives of two young individuals. Lockey, celebrated as an inspirational speaker, tech guru, model, and musician, commands a substantial following on social media. She feels compelled to recount her story following the tragic deaths of 18-year-old Juliette Kenny and a University of Kent student.

Through a candid TikTok video, Tilly Lockey delves into her past, highlighting the critical information she believes the public needs about this potentially deadly disease. “Having survived meningitis B, I feel it’s essential to share my experience, especially with the recent outbreak,” she explained.

Meningitis, she detailed, is the inflammation of the protective membranes surrounding the brain and spinal cord. Tilly contracted the disease at the tender age of 15 months, a time when young children and university students are particularly susceptible.

Reflecting on her early symptoms, Tilly recalled experiencing flu-like conditions, vomiting, and a disoriented state. Initially misdiagnosed with an ear infection, she was sent home without the necessary treatment. “That’s what’s frightening about meningitis,” she noted. “Its symptoms can mimic a common cold, leading to misdiagnosis, when in reality, it could be much more serious.”

The situation escalated when Tilly developed meningococcal septicaemia strain B, which manifested as a distinctive rash rapidly spreading across her body, prompting an urgent hospital visit. Her story serves as a poignant reminder of the subtle yet severe nature of meningitis, urging awareness and vigilance against the disease.

“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:

• a high temperature (fever)
• being sick
• a headache
• a rash that does not fade when a glass is rolled over it
• a stiff neck
• a dislike of bright lights
• drowsiness or unresponsiveness
• seizures (fits)