Meet the member: Michelle

Michelle is 47 and lives in London. Her PH was recognised three months ago following a pulmonary embolism, and she has just joined the PHA UK.

Welcome to the PHA UK Michelle! Why did you decide to join our charity?

“I joined this week [January 2024] as I don’t know anyone else in my circle who suffers [with PH]. I’d like to have more understanding of the condition and real life experiences/ support from others who understand.

My pulmonary embolism was provoked, through taking the combination pill for many years. Fortunately, because of my overall good health and fitness I am not suffering massively. However, to an extent this also masked my condition because my body handles the condition quite well. I wasn’t presenting with all the markers, so this also caused my condition to be underestimated and undetected – until more recently following a second opinion on an early CT scan and subsequent Echocardiogram.

On that basis it has also been mentally challenging because I’m currently unsure of implications of the late diagnosis and still unsure what to expect. Fortunately, my blood clot dispersed since last June but because of the latest realisation I am continuing the blood thinning medication as precaution. It just goes to show that despite general clinical markers everyone is different, and our own individual make up is relative to how we present or handle the condition.”

What’s the best thing about being a member of the PHA UK?

“I’m already learning from others with the condition via the social forums. I also have more information generally closer to hand through the association.”

What advice would you give someone else newly diagnosed with PH?

“I’m still learning myself about PH and how my body is handling things. Like anything I would say learn as much as you can about it and also help to raise awareness – especially as it’s mostly an invisible condition. The general public certainly don’t consider these things but even amongst people close to me, there’s a tendency to overlook things because my suffering isn’t obvious. I am doing what I can via online social media to help raise awareness on PE as well as PH.”

What (or who) makes you happy?

“My family and close friends, as with most people. Despite some teething issues with understanding and awareness we do talk and share on the topic.

Otherwise, as I’ve always been a very active person I still continue to enjoy music, dance and culture so long as I feel okay to do so. Part of this process is learning how to continue living and adapting as necessary with having PH.

I’m determined to continue living my life to the fullest to the extent my body will allow me.”

Thank you to the PHA UK for the services and information it provides, and also other members who are living with the condition and share their own stories. Keep on pushing through!

It’s free to become a member of the PHA UK. Find out more here.