Eleanor

My name is Eleanor.  I am 16 years old, I developed PoTS and EDS when I was 11 and was finally diagnosed at the age of 13. PoTS has drastically affected my life; I often cannot attend school, I have fallen behind with my work and it has stopped me from doing most things that I love.

The biggest challenge with PoTS is how it affects me during the school day as not many people know how to help me with my PoTS symptoms, which include feeling dizzy, sick or very faint. Most people have not heard of PoTS and so cannot understand why I suddenly feel unwell unless I have told someone beforehand and made them aware of what will happen. Thankfully my SENCO team have been very helpful, acknowledging my symptoms and being there when needed.

I have had to make changes over the past few years that have helped me, including drinking lots of water and wearing tight leggings to help with compression, however, I will still get brain fog and feel dizzy but thankfully don’t faint anymore.

My words of advice to anyone who needs guidance and can relate to my PoTS symptoms is to not be afraid to tell anyone that you have a condition that affects you daily and you may need help. Take notice of yourself and what you are doing and try not to put too much pressure on yourself.

It would be great if individuals, who have no idea what PoTS is or how people have it deal with it, researched the condition. They would then be better placed to understand what the symptoms are and how difficult it is to do certain things and possibly then be able to help.

My long-term hope is that doctors and other medical professionals in the NHS become more aware of PoTS and start to acknowledge this condition more. Even though there is no cure there are ways to reduce symptoms and so I hope that one day soon people will be diagnosed more quickly and receive the help needed!