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Joanna A's story

4th November 2018

Joanna has been left with lifelong after-effects from her meningitis and has spent the past four years relearning how to do absolutely everything

Joanna A's story

Doctors told her family there was little chance of her survival, and life may be very different now, but Joanna counts herself lucky to be able to watch her children grow and develop.

The teaching assistant, from Stratford-on-Avon in Warwickshire, recounts her experience here.

“On Monday 24 March 2014, I went to work just like any other day. I worked as a teaching assistant in my children’s local primary school.

“During the morning, I started to develop a headache that felt like a migraine but I somehow managed to complete the day at school. I did suffer from headaches, so this was not unusual for me.

“In the early hours of Tuesday morning, I woke up with sickness and diarrhoea and I reasoned that I must have picked up a sickness bug from one of the children and that is why I had a headache earlier. This was also confirmed to me when I telephoned work to say that I would not be in and I was told that another child in the same class had similar symptoms. I was convinced that I would be fine by the following day.

Telephoned for an ambulance

“However, the sickness and diarrhoea continued onto Wednesday. By mid-morning, I had developed a stiff neck, slight photophobia and felt like I had the worst case of flu. I remember thinking to myself that these were the signs of meningitis but I never for one moment thought that I had it! At this point, thankfully my mum did suspect meningitis and telephoned for the ambulance.

“I was taken to Warwick Hospital and was told by a doctor on arrival that they didn't think it was meningitis and if it was it would ‘just be viral’ but they would treat me for it anyway. The doctor said that they would keep me in overnight for observation.

“I have very little memory of what happened after that, except I remembered the doctors unsuccessfully attempting to do a lumbar puncture. My final memory was on Thursday morning being wheeled on a hospital bed somewhere - which I now know was resus. I looked down at my legs and was alarmed to see that they were covered in a mottled rash!

Going to go to sleep now

“The next thing that I was aware of was being surrounded by doctors and struggling to breathe as I went into septic shock. I started to panic and was pleading with a nurse to help me. The last words I heard was from someone by my head saying, "Don't worry, you are going to go to sleep now".

“I was put in an induced coma and woke up nearly a month later in a different major trauma hospital, University Hospital Coventry.

“In intensive care, I was kept alive by machines that supported every major organ in my body. My husband and family were told at Warwick and Coventry hospital that there was little chance of my survival and that they should bring my two children, aged 11 and 8 years, to say goodbye. My husband never gave up hope on me and decided against this.

First memory on waking

“My first memory on waking up was on my youngest daughter's 9th birthday. My children had not seen me for almost a month. I could not speak because I had a tracheostomy and I could not move because of muscle wastage. I remember desperately trying to stay awake for their visit but I was still heavily sedated. I remember the nervous look on the girls' faces as the nurse suggested that they could brush my hair. The nurse had pulled the bed sheets right up to my chin to hide the devastation that the septicaemia had done to my limbs.

“After four weeks in intensive care, I was moved to a high dependency ward. This was my darkest time in hospital because I was becoming more conscious but I could not move or speak to alert anyone. I felt frightened and suffered from panic attacks and hallucinations. The damage to my skin on all limbs was so severe that it would take a team of nurses hours to dress the wounds.

“Unfortunately, the digits on my hands and feet were gangrenous and had to be amputated, including a partial left-hand amputation. Gradually over the following weeks and months, I grew stronger, had the trachea removed and learnt to sit up and walk again.

Reality sinks in

“After four months in hospital, I returned home and only then did the reality of what had happened to me sink in. I realised that I could do nothing for myself or for my family. Being back at home reminded me of my old life before meningitis. I felt very alone and ashamed because I did not know anyone, especially any adults, who had had meningitis so I blamed myself.

“It was not until my husband showed me other people’s stories on the Meningitis Now website that I realised that this did happen to others. The trauma of having a partial left hand amputation meant that I could not look at my hand for months. It took the patience and sensitivity of an excellent hand therapist to help me look at my left hand without any dressings on.

“I spent the following two years striving to return to ‘normal’ as much as I possibly could for the sake of my family. During that time, I learnt to drive again and returned to work part time. For self confidence in order to return to work, I wanted a prosthetic hand that was made from silicone so that it would look as realistic as possible. After several months of waiting I was told that NHS England would not fund the silicone hand and I felt very let down. Luckily for me two parents from the school I worked at set up a fundraising campaign and raised enough money for me to have the hand made privately.

“I was so focused on moving forward that I never took time to reflect on what had happened to me. However, once my progression plateaued I started to question and look back on my meningitis journey.

Understanding the impact

“In January 2017, I started counselling, funded by Meningitis Now, which helped me understand the impact that this terrible disease has had on me and my family. My daughters and I also attend PGL weekends, where we have made many friends as part of our meningitis family and you feel like you are not alone.

“Over the past four years, I have had to relearn how to do absolutely everything. There are still many things that are difficult for me, such as cutting up my food, peeling potatoes, using hair straighteners, reaching for things on the top shelf of the supermarket without breaking anything and my biggest frustration - cash machines and car parking machines! Even today four years on from meningitis, my right foot has open wounds that need constant bandaging. This affects the simplest of things, such as I cannot shower unless my husband is at home to redress the wound. My feet are a continuous source of neuropathic pain, which can make me feel exhausted.

“I still feel self-conscious about my body image due to my hands and I always wear long sleeves or hide my hands in my pockets. My life will never be the same again, but I do count myself amongst the lucky ones to have survived. I am still here to watch my children grow up and develop into adults.

“My meningitis journey will always continue but it has taught me how precious life is and to cherish it.”