I was surprised when I was diagnosed with Tuberous Sclerosis aged 13.

Back in 2014, I was only 13 and I was a high achiever in high school and on the 31st of January in a lesson I had a twitch randomly set off on my left cheek where my check literally was shaking up and down out of control for around 30 seconds.

My best friend at the time saw it happen and she looked mortified.

I knew I wasn’t imagining it then.

After it occurred I was sent out of the classroom to calm down along with my friend who seemed pretty traumatised.

I’d go round all the members of staff who were in charge of my wellbeing and they all said it must have been me being tired but I knew it wasn’t that because I wasn’t feeling tired at all until that occurred.

When I got home from school I told my mum and dad who didn’t believe my either and that drove me insane.

I coincidentally had a doctors appointment on that same day about something else and me and my dad went and I explained and my doctor was on my side at this point and said if anything of that sort happens again come back and to ask if the teacher in the lesson of when it all happened saw it.

Sadly she didn’t nor anyone else bar my friend.

Nothing happened again so I forgot about it and believed maybe they were right and I was just worn out by schoolwork.

Until 3 weeks later.

After 3 weeks another one of a similar sort happened while it was just me and my dad home and you could tell he was pretty mortified too.

This one was different to the previous ones where this time my mouth was jerking from a normal position into a position that people having strokes have their mouth drop down and I was making grunt noises yet I was still conscious and able to walk.

This one lasted around a minute and was a lot stronger than the previous.

After the second one I was having them every 3 days and everyone was becoming more aware and we then got the doctors involved after we caught a few on tape.

We had the doctors refer us to the epilepsy clinic because it turns out you can have a conscious seizure which we never knew.

We soon learnt that I had seizures and I needed an MRI scan I was slightly relieved to have a diagnosis that we can focus on preventing them.

After my MRI scan we discovered not just epilepsy but also 6 tumours and one was in quite a dangerous place.

My ventricle, this is when everything got serious and all my appointments and referrals were coming through sooner.

We were just lucky they weren’t cancerous.

No one had a clue what these were and I was referred to an even bigger hospital in a city and this is what scared my whole family the fact of not getting a diagnosis on tumours.

After months and months of appointments I was attending, I couldn’t be in school a lot and my grades and attendance were lowering which wasn’t like me at all.

We also discovered that I was having smaller seizures so often I could fit 90 into 1 day and that was so embarrassing and being a 13-year-old your main goal is to fit in and be like everybody else and I realised that’s not the case and I was distraught.

I was showing symptoms of depression and I never felt happy anymore so I was set up to meet with the school counsellor weekly and see if expressing my feelings would help, it didn’t.

I swapped to a new counsellor because the original one left me in anger and I had to skip another lesson to calm down from how much anger the counsellor was giving me.

But the new counsellor was amazing and more like a friend than a therapist. She got me through things.

Whilst things in the doctors were still happening I started being put on medication and seeing if they worked.

Unfortunately, it took 5 different types of medication to handle these seizures which were getting stronger and stronger. I’m now on 3 different medications to prevent all these.

I was still depressed and I couldn’t see the light at the end of the tunnel and I started having panic attacks that not many of my friends understood or really didn’t want to be a part of this mess I was so I started to lose friends which hurt me even worse.

The first person who gave up on my was really unexpected was my best friend for around 13 years, we’d known each other our whole lives.

He’d discovered his own friends and convinced them to not like me either. This didn’t help my depression at and I was just sinking lower and lower.

Still changing medication at this point I started one called Keppra which is known for something called Keppra rage which would lead the person the get angry and physical for no reason.

I got this and I went lower than rock bottom and all it did was make my seizures worse and they started to happen more in school.

This led me to lose more friends

Then back in 2015 which was an entire year later in February I had to go to London for a PET scan and we made a mini holiday out of it and I really enjoyed it and I actually got the right medication to stop my seizures and my tumours hadn’t grown at all but I did have tuberous sclerosis which 1 in around 6,000 people have in the UK which is crazy.

When I got back from London everything started to chill out and my mood was lifting it was great.

Have you or someone you know have Tuberous Sclerosis? Please share your stories with us.