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Helen B's story

10th January 2018

Helen is a meningitis survivor. Twenty-one years ago the then teenager became ill and her family were told to prepare for the worst

Helen B's story

But Helen, from Higham Ferrers in Northamptonshire, pulled through and is now an active and determined fundraiser and awareness-raiser, most recently completing our Five Valleys Walk last year with family members. She tells her story here.

“This January marks 21 years since I had meningococcal septicaemia at the age of 17.

“All of my family had been ill with colds and flu over Christmas, so when I woke up in January with a headache and aching joints, I thought no more of it. I needed to go into college that day as I had an exam, so I dosed myself up with paracetamol and set off as usual.

“Within a couple of hours, I felt like my head was going to explode. I could literally feel it throbbing, and my joints just hurt whenever I moved, so my dad came to pick me up and took me home.

“Within a couple of hours of being at home, I was so sleepy, and remember the aching in my joints even though I was lying down, and my head still felt like it would explode. I started being violently sick, literally waking up long enough to be sick then falling back to sleep. I remember my mum sitting with me and telling me my hands were like ‘blocks of ice’.

“I later found out that one of my family had looked up the symptoms of meningitis, but because I didn’t have a temperature, could tolerate light and didn’t have a rash, they felt it couldn’t be that.

Turned the light on and screamed

“I woke up and remember everything being very silent and still, and I thought I felt better. I called out to my mum, who came in to my room, turned the light on and screamed. I was covered from head to foot in a red blotchy rash and I realised I couldn’t lift my head off the pillow.

“My parents called a doctor, who in turn immediately called an ambulance, and I was admitted to Princess Alexander Hospital, Harlow. I had a lumbar puncture and was immediately given antibiotics by intravenous drip.

“Over the following two hours my condition deteriorated rapidly and my parents were told to gather any immediate family. I suffered two cardiac arrests before being placed into an induced coma and transferred to ITU at Chase Hospital Enfield. My family were told the next 48 hours would be critical and should I survive that period of time doctors couldn’t guarantee what long-term after-effects I might suffer.

Induced coma on a ventilator

“I stayed in an induced coma on a ventilator for 10 days with my temperature spiking at 40 degrees and my heart rate close to 170bpm. I continued to have numerous blood transfusions, x-rays and other tests before spending a further three weeks recuperating on a high dependency ward in hospital, receiving physio daily to get my joints moving again.

“Just over four weeks after being admitted, I walked out of Chase Farm Hospital – my only after-effect at the time being to my sight, but nothing contact lenses or glasses hasn’t rectified, and limited circulation/loss of feeling to some of my toes and fingers.

“More recently, I found out I have a low platelet count in my blood – a side-effect from the numerous blood transfusions. Although not a symptom at the time, I have since struggled with harsh lighting, getting a headache quite quickly with bright electric lights.

Told hundreds of times how lucky I was

“At the time, and since then, I have been told hundreds of times how lucky I was. I don’t disbelieve that in any way. I got the care I needed at the time I needed it. However, what I do continue to struggle with is the guilt of walking away from it, with not even a follow-up appointment, when I look at some children who have lost their hearing, their sight, multiple limbs and people who have died from meningitis.

“Over the last 20 years I have realised I cannot change the past and the way I can help is to raise awareness through the FE college I work for in Northampton, taking part yearly in freshers’ week and making sure all students have symptom cards and know about the vaccination programme.

“I have also taken part in various fundraising activities such as the Prudential RideLondon, my Dad had Meningitis Now as his charity of choice when he was East Heart Bowling President in 2016 and in September last year I was so proud of my son Oliver, who’s 12, completing the Five Valleys Walk with me and other family members – all 21 miles of it!

“In 2018 I personally take on my biggest challenge, joining the team in the Lake District Eight Peak Challenge, where not finishing isn’t an option.

“I am proud to be a meningitis survivor and hope the money we raise will help others on their survival journey too.”