A REDDITCH woman living with Postural Tachycardia Syndrome (PoTS), a condition characterised by an abnormally large increase in heart rate upon sitting up or standing, is raising awareness of the daily struggles she faces.
Kelly, aged 19, was suffering with the symptoms of PoTS at age 14 but was not diagnosed until four years later after experiencing regular fainting episodes.
PoTS can be a life-altering and debilitating health condition.
Symptoms include dizziness, breathlessness, chest pain, fainting, exercise intolerance, and severe fatigue.
Through many trials, Kelly found answers and community, and she now hopes by sharing her story, she will help others who are going through the same thing.
She said: “I have had PoTS since I was 14, however I was dismissed with anxiety and I wasn’t diagnosed until I began fainting regularly at 18.
“After seeing more doctors than I can count, one incredible woman performed an active stand test, and diagnosed me two months later.”
Since then, a lot has changed for Kelly, she said: “I had my drivers license revoked, and I’m now a mobility aid user. But I’ve also had some really positive experiences, such as making new friends with chronic illness, and building an online community to raise awareness.
“It feels strange now to think back on what my life was like before, as PoTS has now become such a huge part of my identity.”
One of the hardest challenges Kelly faced was learning the skill of pacing.
She said: “Not being able to socialise and got out with friends, knowing that they couldn’t understand what I was going through.”
“A few months ago I was fainting in public, having presyncope episodes daily and feeling unwell almost all the time, all whilst working and studying and trying to live a normal student life.”
Despite her struggles, Kelly remains positive.
“I’m still a whole person outside of my condition. I still have hobbies and passions, and this is just something that I have to live with.
“It’s made me more resilient, compassionate and grateful. I’m proud of the person it’s forced me to become.”
Kelly is now part of multiple projects to raise awareness. She is using her experience and research to support others with PoTS.
“I want to remind other people going through this that there is always hope, and there is always someone who will be there for you.
“It’s a journey that continues long after diagnosis, and it’s okay to grieve your old self. You will figure it out, and you will be okay.”
On October 25, PoTS Awareness Day, almost 60 buildings across the UK lit up purple to raise awareness for the condition.
The Light Up campaign is organised by PoTS UK, a small charity dedicated to supporting and educating patients, families, and healthcare professionals across the UK.
