Meningitis Awareness Week 2019

An annual international event to raise awareness about meningitis

This year Meningitis Awareness Week is from Monday 16 September until Sunday 22 September.

Every year we focus on a different aspect of the disease.  For Meningitis Awareness Week 2019 we're focusing on support for people affected by meningitis.

“Meningitis is the deadly disease which robbed me of my only child.” - Edwina Gray, Paisley

What does “meningitis” mean to you?

That’s the question we’re asking this Meningitis Awareness Week to help raise awareness of the improvements in prevention, diagnosis, treatment, support and aftercare needed to defeat meningitis.

We hope you will share what meningitis means to you by taking a photograph with one of our banners and using social media to highlight your experience. I know this may be painful for some people, so we understand if you are not able to take part, but we want as many people to share their experience as possible so that governments give meningitis the prioritisation that it deserves.

Everyone experiences meningitis and septicaemia differently, so everyone will have a different answer. Here are some of the things people have told us that meningitis “is” to them…

  • “…devastating.”
  • “… life-changing.”
  • “…defeatable.”
  • “…preventable.”
     

Below, you can download your ‘MeningitIS…’ placard. We’d be very grateful if you could take a photograph or video of you holding up this placard, and sharing it, accompanied with a short message of what meningitis “is” to you. You can do this by:

  • Tweeting your photo and message, tagging @M_R_F and using the hashtag #MAW2019
  • Uploading your photo and message to Instagram, tagging @meningitis_research and using the hashtag #MAW2019
  • Sharing your photograph on Facebook and in a message to us on our Facebook page (as we may not see it on your Facebook page)
  • Emailing your photo and message to hollye@meningitis.org
     

You could even film a short video instead, if you prefer, and send it in via any of the above channels.

MeningitIS - Aqua on White
MeningitIS - White on Aqua
MeningitIS - White on Purple

Meningitis is ....

- “…the reason my daughter is not staring university this month, please get yourself vaccinated.” – Oliver Kelly

- “…yucky because it made me very poorly and I had to loose my arms and legs” – Harmonie-Rose Hall

“…something that can happen to us all, it invades every part of a persons life and leaves nothing unharmed be that temporary or permanent. It impacts family and friends and tests all those relationships to breaking.” – Lesley Hart

Most people don’t know about the costs of meningitis to people and health service, says our report for Meningitis Awareness Week.

The new report finds although many know that meningitis can kill, the majority don’t know that meningitis can leave survivors with severe and lifelong health consequences.

The report comes as vaccine coverage in babies under one year old has declined.

To support the release of the report, for Meningitis Awareness Week, members of the chairty are standing up and telling the media about the cost of meningitis to their families.

A.

Edwina Gray, lost her only daughter Jennifer (pictured) to the disease three years ago and supports Meningitis Research Foundation’s (MRF’s) campaign for greater awareness about the disease.  Edwina wants others to be more aware of the signs, symptoms and potential consequences.

Edwina Gray, from Paisley, understands how devastating meningitis can be as the disease cost her only child’s life. Edwina’s daughter Jennifer came home early from a night out as she felt sick in April 2016, but thought that she had a bug. The following morning she complained of headache and sore limbs.

After her parents phoned health services and took her to Royal Alexandra Hospital she quickly deteriorated and was put in an induced coma and she died two days later.

Edwina says:  “Meningitis is the deadly disease which robbed me of my only child.  The loss of my daughter has caused myself and my husband inexplicable pain.”

“We have been traumatised by the event and feel that we were helpless to intervene and prevent our daughter’s death due to the rapid progress of this disease and the symptoms being very similar to less serious conditions.”

“We want greater awareness of the symptoms and signs, and what meningitis can do to people and their families.  We want there to be a vaccine available to all which will prevent what happened to Jennifer happening to anyone else.”

A.

Sorina Muresan’s son Ezra (pictured) had meningococcal septicaemia when he was only a year old. 

Sorina got involved with MRF when the family attended a ‘Pushing the Boundaries’ support event for families affected by meningitis. 

Sorina said: “Meningitis is an aggressive disease, and my son had a poor chance of surviving.  Luckily, he did and even though Ezra lost both his legs below his knees, fingers on his right hand, and some brain scars, he is so resilient.”

“Ezra is an amazing boy, he does great with his prosthesis.  He has just started school and he’s doing really well.  It was really helpful to us to attend MRF’s support event and meet other families in a similar situation.”

A.

In 2003, Emma McKeon’s sister Gillian (pictured right) fell ill with meningitis at the age of 25.

She had all the usual signs of a migraine - vomiting, headache and dislike of bright lights. However, Gillian did not develop a rash. As her symptoms grew more severe, Gillian was rushed to hospital. She suffered cardiac arrest and later a series of mini-strokes. Gillian was on life support for 7 months. However, that was only the start of her battle. Gillian fought the after-effects of the disease for ten years.

She was determined to regain her independence, despite the devastation meningitis had caused. Emma (pictured left) describes the courageous journey her sister had with meningitis and the struggle her family had with getting Gillian the services she needed: ‘‘Gillian was in hospital for a full year and a half. She regained some physical movements and had a tracheotomy in place which meant she could not eat. For a long time at the beginning, she could not speak with sound. Lip reading was extremely frustrating for all. As a family, my mother gave up her life for Gillian, caring for her, fighting for her. The HSE provided care for her, but at every corner there was a battle - a battle to get the services she needed. As Gillian was sick for so long, doctors nearly didn’t bother with her. But my Mam was a trooper, and she knew she could not leave her daughter like this. It is down to my Mam; her mental support to Gillian also helped her through it. Being told there’s no point or she’ll get no better was so hard to hear. Gillian would not accept this and neither would Mam.’’

Gillian was very aware of exactly what she lost to the disease and wanted nothing more than her body to cooperate. Following a ten-year struggle with severe after-effects, Gillian sadly passed away from pneumonia in 2013, at the age of 34.

Emma describes her sister's frustration at what meningitis had taken from her: ‘’Everyone around her was getting on with their lives and she was so stuck. The hardest part of it all was that mentally, Gillian was perfect. She knew exactly what she had lost, exactly what she was left with. Physically, her body just wouldn’t cooperate. She worked so hard to regain her life, but was so utterly depressed and frustrated at every point of life now.’’

By sharing Gillian's story, Emma hopes to highlight the serious after-effects of meningitis, promote awareness of the serious nature of this disease, and encourage people to take up any vaccines available to them. Emma explains how Gillian’s illness changed everyone in their family – both good and bad: “I suppose it definitely changed my outlook on life. Life is for living, don’t care what people think, take joy in the little things, and love your family.”

A.

Jennie Day (pictured) developed meningitis when she was eight months pregnant with her now 15 year old daughter.

Jennie gave birth while in an induced coma, she developed life-threatening depression as a result of the trauma.

With effective support people many people can recover fully. Jennie had a cough and an earache, she’d mentioned the symptoms to her GP, who said she had an earwax build-up and that Jennie should return to get her ears syringed.  Quickly after that, Jennie became sick and confused, her partner called the GP who sent an ambulance.  Jennie woke up eight days later, but was confused at first and didn’t understand that she had given birth and was now a mother.  Jennie says:  “Meningitis is a terrifying infection that can hit you without warning, and become life-threatening in hours. If you manage to survive, the outcomes can be devastating.”

“A community mid-wife recognised that I was suffering from depression following meningitis but this took several months to identify.  My GP prescribed anti-depressants as I had serious psychological symptoms so the NHS had saved me for a second time. By the time Eleanor was three months old, I was able to look after her by myself. Up to that point, though, we had been entirely reliant on our wider family to hold it all together.”

“I certainly had very good aftercare from my family, who gave up work to look after me and Eleanor as I suffered from the life-threatening depression which hit me as I recovered from meningitis. I would hope that research keeps developing the understanding of the disease, how it can be controlled, and there’s better recognition and awareness of the potential consequences.”

Happily, Jennie is fully recovered, her daughter Eleanor was unscathed, and she went on to have a son, Sam a couple of years later. 

A.

When David Gibson (pictured) from Fareham returned very cold and shaky from a short walk, his wife arranged for him to see a GP and he was prescribed antibiotics for an infection, but very quickly he got worse. 

He was admitted to Queen Alexandra hospital, was put into an induced coma.  His family was told to come as meningitis was the most likely diagnosis, and it turned out to be pneumococcal meningitis.  David feels that due to the early diagnosis and the excellent care he received, he survived. 

David said: “Meningitis is to me a hidden disease that can have disastrous consequences. I had no idea what it was, and how lethal and disabling it could be, people need to be more aware of the disease and the effects it can have.  You need strength and determination to live, and the support around you is extremely important as you go through the stages of recovery.”

“Initially I lost my sense of taste but this returned soon after leaving hospital, as did loss of sensitivity to the tip of my nose and fingertips. More long term is short term memory loss and muscle waste.  At this time I still have little power in my legs to push up and in my arms to lift, but this is a small price to pay.”

“I was called back for an aftercare interview by a nurse who helped me understand what had happened to me and about building up my strength again, and that it would take at least 12 months to recover.  She confirmed that I had been very lucky to survive.”

A.

Dianne Spalding (pictured) from Kidderminster describes the effect of meningitis on her family during Meningitis Awareness Week.  Dianne lost her beloved husband John, tragically and suddenly. 

John’s death from meningitis was so fast that Dianne and her three children didn’t get a chance to say goodbye.
John Spalding woke his wife in the middle of the night, feeling ill with flu-like symptoms on 23 December 2014 and didn’t get up again.  Later that day his son checked on him, John tried to get up, but couldn’t, and told his family to call an ambulance.  He was dead within three minutes and although the family and paramedics tried CPR he could not be revived.

Dianne said: “Meningitis is a devastating disease which respects no-one which strikes without warning, it can change your life in minutes.  Not having that chance to hold John and tell him how much I loved him was so hard. There was no time to adjust to our life without him."

“I contacted MRF after John’s death because I needed to talk to someone.  I realised that most deaths weren’t so sudden but the support I have had from MRF has helped me understand the disease, help to deal with my loss in as positive way as possible. MRF have listened to me the whole way through and always been there for me. I have become a befriender and an Ambassador for the charity.”

“Although my husband was a doctor and the signs he presented with where not worrying or different than the flu until the three minutes before he died.  Please get vaccinated and increase your awareness of the disease.”

A.

Glenn Robinson, Ken’s son and Hannah’s uncle sadly died years ago when he was only 16 years old, on Ken’s birthday in 1997.

Since then the family have worked tirelessly to fundraise for the Meningitis Research Foundation (MRF).

Ken said:  “We want greater awareness of the symptoms and signs and for there to be a vaccine available to all which will prevent what happened to Glenn happening to anyone else.”

A.

For some, recovery from meningitis is not straightforward as Jo Kelley, from London, and her family discovered. 

Her mum Sheila had unexplained infections, she started to have problems climbing stairs, then became unresponsive.  Eventually Sheila was diagnosed with meningitis.  Sheila is no longer able to look after her husband who has Alzheimer’s, and he is now supported by the family.

Jo is calling for greater awareness of the potential outcomes and faster diagnosis.  Jo said: “Meningitis is devastating for my mum.  It’s clear she’ll never be able to walk again, or care for herself.  It was totally unexpected, even to the doctors.”

“Mum has been left bed bound, which has led to complications such as pressure sores.  Since being discharged from hospital she has been in a care home.  After a year, she has finally finished her treatment and now is much better mentally, but she still needs nursing care.”

“Meningitis is the result of an infection that affects the brain, and from personal experience I have learned there are many different types of infections, all having a devastating effect.  There should be more knowledge of how meningitis can affect people and their families.  Faster diagnosis might have reduced the impact of the disease on my mum.”

A.

With effective support people can recover.

Matthew was only 13 months and Gemma, from Withersea, thought he had a tummy bug but when Matthew woke, he tried to be sick and collapsed in her arms.  He became completely floppy and was unresponsive, and started to go blue at the lips so they called an ambulance. When they got to the hospital Gemma noticed two tiny pin prick like marks on his chest which she mentioned to the consultant who suggested it could be meningitis.

Gemma said: “Meningitis is every parent’s worst nightmare.  I was astonished at how quickly Matthew went from being fine to literally fighting for his life.  Trust your instincts and if something is wrong seek medical advice, don’t wait for a rash and don’t be afraid to get a second opinion. If that visiting consultant hadn’t been in the room, or if Matthew hasn’t collapsed in my arms and I’d put him back to bed it could have been a very different result. The rash didn’t appear until Matthew was already in hospital.”

“We weren’t offered any information at all, we were just discharged. I had to seek help from MRF and my health visitor. Matthew sufferer severe night terrors following his stay in hospital, and had to have additional hearing tests as the first ones were inconclusive. He used to tire very easily and we had to use a buggy for long journeys until he was about four years old.  He has delayed expressive speech and had to have support from a speech and language therapist.   It could have been a lot worse. With Meningitis B having a 10% mortality rate I’ll take any side effect you want to throw at me!”

Marc Haigh’s twin brother Jordan had meningitis twice as a baby and suffered from irreversible brain damage as a result. 

Without effective support, survivors can struggle.  Marc from Huddesfield said: “Meningitis is potentially a life changing illness. Not just for those who have contracted it but also their families. Jordan suffered irreversible damage to his brain as a result, of the illness, but it could have taken his life. Its effects on me have been quite profound and, thirty years later is only something that I have started to come to terms with and understand.”
“Throughout my life I have been living with a kind of guilt hanging over me. Since I'm aware that the type of meningitis Jordan contracted is caught via the birthing canal, I am very aware that I could have easily caught meningitis instead or as well as Jordan. I have never felt able to speak about them properly, or even admit to myself that there was an issue. My main concern was protecting my family. I knew my parents had a lot to deal with, caring for a child with severe disabilities.”

“I hope that more research can be done so that meningitis can be eradicated. People need to be more aware and awareness only seems to increase when someone has contracted meningitis. It then seems to die down. Also, I believe that more support is needed for the families.”

If you are a member of the media and would like to talk to one of our Meningitis Awareness Week case studies, get in touch with Sophie, our Media Relations Manager.

Sophie can also provide you with the national and regional report results, including regions not covered by an MRF case study; Wales; South West England; East Anglia and the East Midlands .

Public unaware of meningitis after effects
A new blog for Meningitis Awareness Week 2019
Commissioned for Meningitis Awareness Week 2019. The survey reported on found only a minority of the UK population know about most of the long term possible consequences of meningitis.
Share this
Media contact
Sophie Beyer - Media Relations Manager
Tel: 07875 498047

Ways you can help

Please do what you can today and help save and change the lives of thousands