Stefania: "Stars can't shine without darkness"
Where do I begin?
It was a Thursday morning in November and I got up to get ready for school.
I began to feel unusually tired, dizzy but in a way I've never felt before and it was difficult to explain exactly what I was feeling. My mother brushed it off by saying I'd got to bed late the previous evening and to hurry up as I'd be late for school. When I arrived at school I felt even worse, I became extremely clammy, my head was feeling fuzzy and I just couldn't stand up. The bell rang and I tried to get up and I collapsed! An ambulance was called and I was taken to hospital. After blood tests and ECG which all came back normal I was sent home and they put it down to anxiety!
For two months I was syncope free but wasn't feeling myself.
On the 6th January on my way to my lesson at school, I fainted again. An ambulance was called, same thing they put it down to anxiety, although I wasn't feeling anxious at all.
By the end of January I had fainted 20 times. I was unable to go to school, or focus on anything.
Going up the stairs had become my biggest challenge. My legs felt so weak!
I had chronic fatigue and no one could give me any answers. Although my GP was very sympathetic, he didn't understand what was going on. He referred me to see a cardiologist and that was all he could do. The waiting list was ludicrous. My mother and family were becoming desperate, seeing me deteriorate day by day.
My mother started researching my symptoms but there are so many causes of syncope.
We arranged to go overseas to have some tests done quicker and finally we had a little breakthrough! Following a series of tests, I had a tilt table test which showed my heart rate increased dramatically upon standing, but they were unable to give me a diagnosis.
I returned to the UK and after doing research online, my mother mentioned PoTS (Postural tachycardia syndrome) I seemed to fit the criteria.
At this point, my conditions had deteriorated, I was fainting several times a day. A total of 79 times in one month! My family was helpless.
We went to see Dr. Alessandro Giardini at Great Ormond Street Hospital who believed that I did have PoTS. He performed an active stand test and finally, confirmed my diagnosis.
I was advised of lifestyle changes and was put on medication (ivabradine).
I am hopeful and keeping positive as I want my life back.
Without the help and support of my wonderful family I wouldn't be where I am now. It has been extremely difficult for me as a patient, and them as carers.
I can't even imagine what it's like for them seeing me unable to do daily activities that normal 17 year olds do.
Although PoTS isn't a life threatening condition, it definitely is life altering.
Once I get better, I hope to raise more awareness of PoTS.
I was fortunate to get a diagnosis within months as many other sufferers have had to wait years.
This is my story, and remember "Stars can't shine without darkness"