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Ami K's story

19th October 2018

Ami, from Greater London, contracted bacterial meningitis 35 years ago at the age of 2. She survived her ordeal but the disease has left her with lifelong after-effects, making her keen to tell her story and raise awareness. She shares her experience here

Ami K's story

“In 1983, at the age of just 2, I became seriously ill with bacterial meningitis, which at that time was not diagnosed until days after my symptoms become too worrying.

“I can say that I was fortunate because I survived, yet I will bear the consequences of this insidious disease for the rest of my life. I stayed in the hospital for a few weeks. After being discharged, I was frustrated and my behaviour was very erratic. I kept hiding, I was not adapting to being at home.

Complaining about pain

“The week leading up to the day I went to hospital I had been complaining about pain and stiffness in my neck, along with a headache, and that I was feeling nauseous and vomiting. By then my temperature had risen and my older sister, Nanou, tells me that during this time I was also put into a bed of ice to help cool down my body.

“My mother took me to see my doctor and he thought I had the flu. Mother called the doctor again and he thought I might not be over the flu yet. But within hours I was even sicker. A few days later I became very ill after being unwell for several days with a fever, general lethargy, a disinterest in feeding, diarrhoea, vomiting, a distinctive cry and general aching.

Lapsed into unconsciousness

“I then lapsed into unconsciousness, convulsions, foaming from the mouth, body stiffness and discolouration. On the same evening I was admitted into intensive care.

“After my ordeal my mother became suspicious because, although I felt much better, I wasn’t able to walk for a while. I had also lost my hearing, as a result of the infection. This was not spotted whist I was in hospital. Before the disease I had learned to say words that suddenly I could not speak properly. My speech deteriorated until years later.

“I was a different girl. My mum and older sister had a very hard time understanding why I felt different and I became very isolated as a child who did not want to comb her hair or to look at herself in the mirror.

Lifelong impact

“I followed my mother everywhere, becoming hysterical if I could not see her. I relied on visual clues to try to solve what was happening around me. It was hard and all new. My worst moment was when I put my hands over my ears, took them away and nodded my little head.

“I also developed a vestibular disorder with severe positional dizziness, which lead to my unbalanced life in many aspects. My experience with meningitis has had a lifelong impact. It is so important to act quickly and to learn from each other so that there is greater awareness and more lives can be saved.

Raise awareness

“My scars are my story and I am proud of them. I would like to raise awareness about meningitis using my own story as a platform. I would also like to take this opportunity to apologise to my older sister for having to live this traumatic and unfortunate experience at a very young age. She was very brave, helping my mother cope after my infection. I hope I've been able to help many others through my own personal challenges and I would like to carry on helping others.

“Thanks for taking the time to read my story."

Read Ami's blog.

Ami has also set up a site to help her to purchase equipment and software that will enable her to carry on writing and raising awareness. Support Ami.