About me:

I am a 2-time Viral Encephalitis survivor. The cause of this has never been established. I also hold the unenviable position of being a subject of medical research at the Royal Free Hospital in 2017.

My encephalitis story:

I usually refer to this dreadful condition as a ‘thief of self’ because it took so much away from me. I lost myself emotionally and psychologically for a while and had to have some counselling.

My old memory was mostly intact but my new memories have been affected by the virus. Initially, I was unable to remember or process new information so I have to make notes otherwise I forget. This loss of new memory caused me some difficulty when I returned to my job. It still affects me today. One other unexplainable loss is my inability to remember names of people and things, and this cuts across both my old and new memories.

Other key losses includes the loss of independence as I had to hand in my Driver’s Licence because I developed epilepsy. Balance issues have caused me to fall down in dangerous places including falling between a train and the platform. I also suffer with swallowing issues. I have double vision and vertigo. I also developed a benign brain tumour whilst I was in the High Dependency Unit during my second bout with the virus. The tumour which was fast growing had to be surgically removed in August 2019.

In addition, I suffer with fatigue, ticks and tremors and have had a significant weight gain because I was on steroids from October 2017 to end of August 2023. I take so many medications to control the epileptic seizures and have just had one of these increased. So, it is no walk in the park.

I refer to myself as a warrior queen with 9 lives because of my various brushes with challenging health situations. The worst of all is Viral Encephalitis which I survived against the odds.

I never knew that such a virus existed until I caught it whilst on a Christian trip to Israel at the end of September 2017. It all started with a mild headache a day after our arrival and I thought nothing of it. I took some paracetamol for 2/3 days and it stopped. We went out on our 3rd day after arrival and I was tired when we got back so I had a short nap. The leader of our group insisted on me being woken up which was divinely inspired as I had a massive seizure within minutes of joining them in the living room. The seizure presented like a stroke. My right arm and leg were temporarily paralysed and numb. My tongue was twisted and my face twisted totally from the left side to the right. My face, right arm and leg corrected themselves within 5 minutes but it took about 15 for my tongue to unfurl so I could speak. It was weird to say the least.

I had another grand mal seizure 3 days later and was referred to Hadassah Hospital by the visiting Doctor. I had a battery of tests and various scans such as lumbar puncture, CAT, PET and MRI scans. All of these came back negative.

This was the start of my journey as a 2-time survivor of undetermined Viral Encephalitis.

Why I chose to leave a gift in my will:

I really do not know how I could have coped with the new me and the myriad of unwanted gifts Viral Encephalitis gave me without the information and support from Encephalitis International. They gave me the confidence to return to work and provided me with several information literature pieces on Viral Encephalitis for my employer. This helped greatly in navigating the work environment. I do not think I would have lasted as long as I did without the information because no one knew what to do.

My family have benefited from the information from Encephalitis International. It has helped them to understand the illness, how to support me, to help me recover. The literature has also assisted my family to cope with the new me.

It also gladdens my heart that information from Encephalitis International has been used to save the lives of two young children who took ill in Nigeria. The most recent was a couple of months ago. All of these are great reasons to support the amazing Encephalitis International.

 

For others considering leaving a gift in their will:

Leaving a gift to Encephalitis International is a win-win situation for everyone. It is a no-brainer!

Encephalitis International took a lead into researching the virus with the medical community without funding from central Government. All of this was done for the benefit of humanity.

I do not know how Encephalitis International started but the Charity is a lifesaver. Encephalitis does not discriminate, it simply attacks anyone and it steals the essence of who they are. Therefore, leaving a gift could be helping the giver or generations to come. Everyone benefits plus it reduces the capital gains tax on death duty. What is not to like!

Support Encephalitis International to continue with raising awareness of this extremely dangerous, unpredictable and life changing illness so as to prevent loss of lives. I am definitely one of the lucky ones!