I first fainted on 8th March 2017. It was a terrifying and confusing experience. I went to the GP that evening and was told that it was very normal for teenage girls to faint due to our hormones and that it shouldn’t happen again. I left the doctors surgery feeling less confused and slightly reassured.

The next day I fainted again and I continued to faint almost every day after that too. Within a few weeks, I was fainting multiple times a day. Understandably, my parents were desperate and I was terrified. We went back to the GP and said, ‘this can’t be normal – I am surrounded by teenage girls every day and I have never seen any of them faint once!’

Because I was collapsing anytime and anywhere, mostly without warning, I sustained quite a few head injuries and that was when the school told me I had to wear a helmet.  I hated having to wear the helmet; it made me feel really embarrassed, self-conscious and insecure about myself.

My parents were desperately trying to figure out what was going on. I had several trips up to London to see various specialists - cardiologists, neurologists, radiologists, endocrinologists and more - yet none of them could fix me. I underwent so many tests.

Eventually, the cardiologist told me that some of my faints were genuine faints but that the majority were psychogenic blackouts, as a result of stress or anxiety. He told us that in order for me to get better, I would need to have ‘intensive counselling and Cognitive Behavioural Therapy’. So, I started seeing a clinical psychologist who wrote down everything I said and made me do exercises that made me feel weird and uncomfortable.  My fainting wasn’t improving and I dreaded all of my sessions. The problem with this treatment was that my diagnosis was wrong. There was nothing wrong with my mind, they made me think I was crazy.

I stopped seeing the psychologist after about six months and at around that time, I began seeing a consultant paediatrician at the Conquest Hospital in Hastings who knew exactly what was wrong with me. He told me the reason I was collapsing to the floor was because my blood pressure falls to an unsustainable level - suddenly and mostly without warning. He prescribed a drug called midodrine, to help raise my blood pressure, and it had an impact almost immediately. My fainting drastically decreased from 8 times a day down to 4-6 times a month (which still remains the best it has ever been). After what felt like an eternity, I began to feel normal again.

However, good things don’t always last. I was warned that there may come a time where my body gets too used to the medication. Initially, I was taking one tablet a day but over time, I have had to gradually increase the dosage. I am now taking five tablets a day. 

Over the summer we all agreed to trial a pharmaceutical ‘holiday’ to see if the medication was genuinely needed. I only just started decreasing the medication when it became very clear that I definitely needed the higher dose. I began fainting multiple times a day again and it felt like a massive step backwards. 

I was put back on the higher dose of midodrine but continued to have terrible headaches and constant severe dizziness. Along with these symptoms I was fainting once a day, every day and it was time to go ‘back to school’. My fainting continued to get worse so I went into hospital for three days in a row to have a two-litre saline infusion each day.

The headaches and dizziness completely disappeared!  Sadly, it’s not a permanent fix. A couple of weeks later the dizziness returned and I began fainting again. I have subsequently been back to hospital for more saline as right now it seems to be the only thing that helps.

Even though my condition isn’t life threatening, it is life changing.

During the summer, I fainted off a jetty into the sea. No one saw it happen. Thankfully, within a couple of minutes, my family realised something was wrong. I don’t remember anything apart from waking up in a rescue boat surrounded by people, some familiar and some not at all. I was shaking for hours afterwards and it truly traumatised me. I have never felt so scared in my life.

I haven’t been swimming since that day - the water terrifies me now which is the most upsetting thing as not even a year ago, it was my favourite place to be.  If I had been in the water that day for even a few more seconds then I may not be here telling you my story today. It wasn’t until that day that I truly appreciated the severity of my illness.

Little things that most teenage girls and boys, in fact people of any age, do on a daily basis without thinking twice, I now can’t do because of my condition. I can’t go anywhere by myself; I’m not allowed to catch a train on my own in case I faint off the platform, I won’t be able to learn to drive when I turn 17 and I definitely won’t be returning to the water any time soon.

And on top of everything, I am currently blind in my right eye due to a particularly bad faint over the summer. I don’t know if my eye sight will ever come back. In fact, I don’t know if I will ever get better and stop fainting completely.

Unfortunately, there will always be people who bring you down, who make fun of you or find the need to laugh at a situation that to them means nothing, but to you is your whole life. I know I am referred to as ‘the fainting girl’, ‘the girl who wore the helmet’ or most recently, ‘the girl who looks like a pirate’. I try my hardest to focus on the people who make me happy and who are always there for me no matter what, but sometimes that’s not so easy to do. 

My condition is not caused by stress or anxiety, but is definitely worsened by it. I know I faint a lot more when I’m going through a difficult time with friends, family, school work or even something completely different that scares or stresses me.

I don’t want other people to suffer as much as I have or to have to go through the same frustrating journey to get a diagnosis, so I’d really like to do something to make a difference. I’d really like to raise money and awareness for STARS, the charitable organisation created to help and support RAS patients like me.

STARS stands for Syncope Trust And Reflex Anoxic Seizures. My school is supporting my cause over the next few weeks; we're going to have a Mufti Day and a big netball tournament and I hope to raise as much money as possible.

I have dyed my hair red to raise awareness of Reflex Anoxic Seizures; I believe it is the perfect colour to represent my condition. To me, red symbolises two things: Love and Danger. I have come to realise how dangerous my condition can be for me on a daily basis and I have also realised that you can’t be an RAS patient and get through each day without love and support from friends, family, teachers and doctors.

Thank you for reading my story!

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