29 June 2018
Written by Becky Parry
“If you are lucky enough to survive, it doesn’t just go away. You may be left with devastating ailments for life.”
Although meningitis can strike in a matter of hours, its effects can last a life time. Those who lose their lives to the disease leave behind grieving loved ones. Many survivors experience physical and mental health problems that make returning to ‘normal’ completely impossible. After months of hospitalisation and rehabilitation, survivors may find that they are no longer able to work, need a part or full time carer to help them complete everyday tasks, and have to move to a specially adapted home that accommodates their new needs.
Jane has a physiotherapy session twice a week. She and her fiancé dream that one day, Jane’s legs will work again.
To help raise awareness of the potential lifelong impact that meningitis and septicaemia can have, we are sharing the story of three incredible meningitis survivors whose lives have been deeply impacted by the disease.
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Bacterial Meningitis
In Europe, up to 1 in 5 bacterial meningitis patients will die. Many survivors will be left with a number of serious impairments that require long term on-going support. These can include but are not limited to: brain injury, cerebral palsy or epilepsy, behavioural/emotional changes, blindness/vision loss, deafness/hearing changes, depression and mood swings, memory lapses, insomnia, extreme fatigue, developmental delay in children, and learning difficulties.
Pneumococcal and meningococcal meningitis are two different types of bacterial meningitis. Cameron was 5 ½ months old when he developed pneumococcal meningitis. His mum says:
“Cameron survived, but with life changing after effects. He sustained severe brain damage, significant loss of muscle strength, total deafness in one ear, a wandering eye and life threatening epilepsy. Cameron’s abilities were less than a new born; he even had to learn to suck again.
These days Cameron is a grown man who is non-verbal, not toilet trained and needs continual supervision to keep him safe. He is similar to a toddler, although he is 22 years old. He loves life and spreads love with everyone he meets, but he will never live an independent life, work a paid job, marry or have children.”
Meningococcal Disease (Meningococcal Meningitis and Septicaemia)
Meningococcal bacteria live at the back of the throat and nose. They can sometimes pass through the throat into the bloodstream, causing septicaemia. From the bloodstream they can then pass into the lining of the brain (the meninges) and cause meningitis. This means that meningococcal meningitis and septicaemia often occur together.
Sometimes septicaemia is so rapid and severe that there is no time for the bacteria to enter the brain lining. Meningococcal meningitis and septicaemia, whether they occur on their own or together, are often referred to as meningococcal disease.
In addition to the after effects associated with meningitis, those who survive meningococcal septicaemia may face organ failure and loss of blood supply to their legs and arms leading to amputations.
In 2016, Sarah from Australia was diagnosed with meningococcal disease:
“I was 30 years old, completely fit and healthy. Meningococcal disease left me on life support for 8 days initially, then a further 4 times afterwards. Now, almost 2 years on, I continue to struggle. Due to the septicaemia I had multi organ failure which resulted in the removal of my spleen, gallbladder & complete kidney failure. I remain on dialysis to live until I am well enough to get a kidney transplant. I needed to learn to walk again and had several toes and fingers amputated. The loss of 20kgs left me deathly thin and malnourished, needing a feeding tube multiple times. I have had over 20 operations in less than 2 years. Chronic pain & psoriatic arthritis most days confine me to bed.
Being in hospital so frequently and having no spleen increased my risk of picking up hospital acquired infections. Having Clostridium difficile bacteria (C-Diff) in my bowel caused it to become toxic, and without surgery to remove it, I wouldn’t have survived. This resulted in me now having an ileostomy bag. Every day, I face new challenges. I am constantly nauseous and I never know what the next day will bring.”
Viral Meningitis
Although viral meningitis is rarely life threatening, it can make very people unwell and leave them with a number of life altering after effects. These can include depression, exhaustion, concentration and balance problems, headaches and mood swings.
In 2013, Alex was diagnosed with viral meningitis. His family watched as he went from having flu-like symptoms to being in a coma in less than twenty-four hours. After waking up several days later, he began to slowly recover. Alex was sent home but relapsed a month later – he had a grand mal seizure which he did not wake up from for twenty-six hours. It has been many years since Alex was first diagnosed, and he still has side effects such as loss of memory from before he was sick and no sense of smell.
**Meningitis can affect anyone, of any age, living anywhere in the world. If you suspect the signs and symptoms, we urge you to seek immediate medical attention.
If you have been affected by meningitis and would like support, please use our members map to find a CoMO member working in your country or email us.
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Becky works at CoMO's Head Office in the UK and coordinates CoMO's communications and events. She studied Philosophy at the University of Sussex and has a Masters in Human Rights. Becky has a background in international development and has worked for a variety of charitable organisations throughout her career.