In conversation with Sophie

Sophie West recently got in touch with her petition. We had already started ours so decided to join forces and share Sophie’s petition – Postural Tachycardia Syndrome: fund training and facilities.

What did life look like for you pre PoTS?

Pre PoTS I was very active and loved dancing, taking long walks with my dog, and keeping busy with work, studying, sewing, and baking. These activities were not just hobbies; they were crucial for my mental well-being.

When did you develop PoTS and what has your journey to diagnosis been like?

About two years ago, I was diagnosed with PoTS after a long journey of attributing my symptoms to anxiety. I finally sought help when my condition began to seriously impact my daily life, and I was fortunate to receive a diagnosis within a year. Sadly, my local area lacks recognition of PoTS, and right after I was diagnosed, the only specialist retired without a replacement. Since June 2024, I’ve struggled with limited support, which has led to health anxiety and depression. When I learned about my condition from a tilt table test, the advice was simply to search online for information. Thankfully, resources like the PoTS UK website helped me understand my condition better. While it’s comforting to know PoTS isn’t life-threatening, the fear and debilitating symptoms remain. I want anyone going through similar feelings to understand that they’re not alone.

How is life for you at the moment?

Life has been quite challenging lately. I’ve had to let go of dance and other activities I once loved, especially my work in costume design for theatres. Unfortunately, my symptoms from PoTS have made it impossible for me to continue in that career. Despite this, I try to focus on my past achievements rather than what I’ve lost. Being unwell has encouraged me to slow down and truly appreciate what I have and the people around me.

Why have you set up this petition?

I hit a low point just before Christmas, feeling like life wasn’t worth living after losing everything I loved. I had struggled to find help and it was tough accepting that things seemed stagnant. Eventually, I realised that I had to take charge of my own life and be my own advocate. I decided to start a petition to give a voice to others in similar situations, hoping to unite our stories and make a stronger impact moving forward.

Why is it so important that people sign it?

To achieve the change we all desire and continue enjoying our favourite activities impacted by PoTS, it’s essential that we come together and advocate for our cause. We have just six months to gather 100,000 signatures to prompt Parliament to discuss our petition. Failing to reach this goal could lead to our concerns being overlooked, despite the challenges many of us face daily due to this condition. Let’s demonstrate that PoTS deserves more attention and, with collective effort, we can hope for a cure in the future.

Do you have to have PoTS to sign the petition?

If you’re in the UK and believe that this cause is worth fighting for, then I invite you to sign the petition! It’s a fantastic way to be part of something meaningful and help drive positive change. Your support can make a difference!

What can others do to help? 

There are so many ways for you to get involved:

• Get involved by sharing the online petition poster I have created in your community and on social media.
• Use PoTS UK’s resources to easily write to your MP; the pre-written email makes it quick and simple.
• Remember, MPs are there to help you, so educating them about your condition is important.
• Advocate for yourself and educate medical professionals about PoTS, directing them to PoTS UK for accurate information.

One more doctor understanding PoTS is a big step forward and could make a huge difference for another person in the same position as you!