Anna

I was diagnosed nearly two years ago, by Professor Lobo, who I actually found through the PoTS UK website. I was training to become a professional dancer before I had PoTS. It felt like one day I passed out and just never stopped.

I was constantly dizzy and exhausted and I had no idea what was happening. I was very lucky with my diagnosis; out of complete luck I ended up calling a 111 worker who knew about PoTS and mentioned it. From there I was able to do some research and found PoTS UK which led me to my doctor. I have had incredible treatment. I had lost all of my independence, I was losing friendships, I wasn’t able to leave the house without a family member or a wheelchair. Leaving the house felt terrifying as I passed out a lot or had severe full body tremors. I missed out on so many things and was missing out on my teenage years and education. My biggest challenge was feeling like I was missing out, I was constantly exhausted and could hardly leave the house without having some kind of episode. Luckily, I have finally found what has worked for me. Ivabradine has been a life saver as well as the electrolytes from LMNT, I’ve tried so many different medications like midodrine and fludrocortisone for example. My biggest piece of advice for other people is that you are not alone, PoTS can be terrifying and isolating but there are so many people out there who will support you through every part of your journey. Also things will get better. It will take time and nothing is linear, but everything will become easier with time. I still have days where I struggle, and I still have some treatments to do but I finally feel like I’m starting to live again. I get to be a teenage girl and see my friends (even with some differences to before) and best of all I’m back doing what I love most which is dancing. My biggest hope in raising awareness is that not only will a normal person have more of an understanding, but that medical professionals will. I alongside a lot of my PoTS friends have found a real lack of knowledge in the medical field surrounding PoTS, and I hope with more awareness it may become easier for others to access treatment. 

Thank you, PoTS UK, for helping me and my family along my journey.