3 True Stories | Life After Meningitis

Author: Meningitis Now

So on a bad day it's mainly due to pain in my feet and then when I have a lot of pain I generally have to take more pain killers which I hate doing. They make me feel horrendous and they take the pain away but they take everything else away with it as well which is not a nice feeling. So on those days you just have to remember what's most important and so sometimes I'll talk to my sister Lucy and that will make me smile. Things like that make me a lot happier. Hi my name's Sophie, I'm 24 years old and I'm currently a nursing student at London Southbank University.

I contracted meningococcal septicemia when I was 21 and from that I lost the ends of my feet and my finger tips. On the 26th of July I had been quite unwell and I'd been to the hospital as I just felt awful. They diagnosed me with having a stomach bug and they sent me home even though my white blood cell count was really high. The next day I woke up about four o'clock in the morning and I was violently shaking and I couldn't seem to stop it whatever I did. I said to my boyfriend that we needed to call an ambulance.

I just knew that I had to get to the hospital at that point. The ambulance came and it took a while but we ended up going to the hospital and whilst I was in the ambulance that's when we saw the rash and it was spreading up my legs. It was deep dark purple and it was unlike anything I'd ever seen before. I think Matt was quite shocked as well. After that we got to the hospital and I don't remember too much but I remember coming into resus and everybody putting wires all over me, canulas, breathing masks, everything, just to try and get me stable enough and a couple of hours later I went into cardiac arrest and my heart stopped. I think the hardest moment for me was when I was when I was in the Rena Ward and I had to learn to walk again.

It wasn't the learning so much it was the pain in my feet. Every time I put my feet over the side of the bed the pain from the blood going down to feet where there were no pathways for the blood to go anymore. It was extremely painful, so trying to put my feet on the floor and trying just to walk a couple of steps was very difficult but after a while you kind of accept the pain and you just do it because you want to and you want to get out of that bed and keep living your life. One of Britain's top doctors, Dr Parvis Habibi has specialised in treating many cases of meningococcal septicemia in the intensive care unit at St Mary's hospital. People think of meningitis because first of all it's fairly common and it's easy to say. Meningococcal septicemia is a bit of a mouthful.

3 True Stories | Life After Meningitis

Septicemia kills very quickly and survivors often are left with mutilating injuries - massive scars, amputations. I realised when I started going to nursery that I was different, all the way through life. I am not the same as everyone else but I can do just as much as everyone else. Dealing with different things on a daily basis, going through life learning how to write, learning how to eat, learning how to pick up things off the floor - it's a whole new process for me. I think meningitis is one of those diseases which is little heard about, whereas you get other ones that are heard about on a day to day basis. I think with meningitis it's never going to go away, it's always going to be one of those that's going to kick around and could hit you at any point in life. In 2014 the UK became the first country to introduce a free vaccine to children under the age of one. Following the recent death of a 2 year old after she contracted meningitis B, a petition demanding that the Men B vaccine be made available to all children has sparked debate.

Now we do understand the cost effective process and we do understand that with a new vaccine we won't be able to measure the impact for another 2 years but we believe that by extending it to the under 5's the cost won't be huge and it will save hundreds of lives. The night I put Ellie to bed and she was absolutely fine and all of a sudden she started making a really low groan. As soon as we touched her her temperature was exceptionally high.

We went down to the hospital for about four or five hours and got sent home. They just told us it was a urine infection. We were back home probably about six hours and she was very, very close to death by the time we got back down to the hospital. We barged through the triage where they assess people and we just barged straight through there. We were starting to get told off, pulled her top up and showed her back which had now started to spread quite quickly. Went through to the children's A&E and then everything just went absolutely mad. You got to a point where you could clearly see what parts of her body were dying off and you knew it was coming.

That was something we learnt as we went along, it was part of the meningitis I didn't know could happen. It was only very soon after being there you realised it was going to happen and for every day you was hoping 'Right hopefully this survives, hopefully that' and particularly her hands were not doing too bad and then we went away, we had to come away from the hospital. We were given a room just down the road and we came in one morning and the hands had just deteriorated over night.

We knew then that was a really bad day because we thought that was such a massive thing to try and keep. So that was probably one of the worst days in there I think. There's nothing to describe it, it's hell on earth really, just you're going to lose one of your children - see look, even now - it's about the worst thing that can happen in your life I think. It's extremely unlikely that it's going to happen to you but obviously we're one of the families it did happen to. You can't say it's not worth it, for every one child that has to go through this, whatever the cost to us, it's worth every penny.

Whatever the cost would be to not have another family go through what we've had to go through.

Stuart Levitz, MD: Fungal Meningitis

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