Emma

Hi, my name is Emma, aged 17.  I am sharing my story in the hope that it helps anyone else at the beginning of this difficult journey. PoTS symptoms suddenly appeared in my life at the age of 10 when one day I unexpectedly collapsed at school with tachycardia and the shakes.  Following more subsequent episodes in the following weeks and an ambulance journey to hospital from school, many more hospital appointments and tests became part of my life. 

I remember seeing Cardiologists, all either puzzled or dismissive of my condition, until I saw a private Electrophysiologist who suspected PoTS/EDS.  I was admitted to hospital after an episode and I was finally referred to a Neurologist for a tilt table test by a Cardiologist who took notice of my standing heartrate compared to not standing.  My heartrate at the time used to jump from around 60bpm to 170+.    

At the age of 12, the tilt test confirmed the diagnosis of quite severe PoTS/dysautonomia/VVS, and I was also diagnosed with EDS around the same time by an NHS genetics team.   

Getting school to understand and my parents fighting for the support I needed was difficult for us as a family.  Everything that I used to take for granted, like visiting friends, social activities, school, riding lessons, and my acting classes all disappeared from my life.   

Push through my symptoms

When I started secondary school, I tried to push through my symptoms for weeks.  Every day at school, I would end up in the medical room after an episode of dizziness, shakes, tachycardia & BP changes.  When it got to the stage that I was spending more time in the medical room than the classroom, I went from full time education to very part time.  My timetable was reduced to 3 mornings initially, even this was a struggle, so I had to eventually do online schooling instead.  So almost all my secondary school years have been spent at home.   

In the last school year (age 16), I progressed to spending just one hour a week at school.  Around this time, my Neurologist introduced Ivabradine and my symptoms became a little more manageable. I was regularly seeing Occupational therapy to help with pacing due to chronic fatigue, also using a wheelchair. 

I have a positive and normal as possible life

I am so proud that despite not attending secondary school, I achieved 3 good GCSE’s.  Managing my condition with pacing has been the most important lesson for me.  I have just completed my first year of sixth form college and progressed to going into school for one hour a day, a massive leap for me. I am doing one A level at school, and one online.  I am about to start my second year and have even managed to squeeze in a little social time with friends, and attend one drama class a week (it is worth the post fatigue hangover!). So, despite my conditions, I have a positive and normal as possible life – I have even been signed by an acting/modelling agency – so fingers crossed, I can get some part-time work! 

The best advice I can give is: 

• Don’t push yourself to do too much, your body will pay for it! 
• Surround yourself with positive and understanding people. 
• Your health and happiness has to come first. 
• Look up which professionals understand your condition, don’t see anyone who doesn’t. 
• Using a wheelchair can be a very positive step forward and it can enable you to do more.   
• Don’t let yourself worry about what people think, your true friends will stick by you. 
• Stay strong, things will get better!