Failsworth woman Claire calls for more understanding of hidden disabilities
Date published: 23 October 2024
Claire Lorenzilli
A woman from Failsworth who lives with a challenging rare disease is calling for more understanding of hidden disabilities.
Claire Lorenzilli has pulmonary hypertension (PH), a life-limiting condition that causes high pressure in the blood vessels connecting the heart and lungs.
She struggles to breathe, can’t walk very far, and is constantly exhausted – but to look at her, you wouldn’t know that anything is wrong.
Claire is backing an awareness day to encourage understanding of PH and highlight the difficulties of living with invisible illnesses.
PH Day UK takes place on Friday, November 1, and is organised by the Pulmonary Hypertension Association (PHA UK), a national charity that supports people affected by the condition.
“It’s frustrating because people look at me and see a healthy young woman, but they don’t see what’s going on inside,” said Claire.
“People just assume I’m lazy for not walking far, and they can be quite mean when they don’t understand what’s going on.
“I have a blue badge for the car and people stare when they see me get out without a stick or a wheelchair.
"I’ve been challenged about it, and it’s very difficult.
"People just need to be a little bit kinder.
"Don’t make assumptions just because you can’t see something physically wrong with a person.”
Claire received her PH diagnosis a year ago and she must inhale strong medication every three hours to help control her symptoms.
There is no cure for the disease, and she knows that it will shorten her life.
“This disease has changed everything. I can’t work, I can’t go on nights out or holidays like other people, and I’ve lost a lot of friends,” she said.
“The medication has helped - I couldn’t even get to my front gate before I started taking it - but the breathlessness still really affects me.
"There’s nothing scarier than not being able to breathe; it’s a horrible feeling.”
PH affects just 8,000 people in the UK. It causes high pressure in the pulmonary arteries and those with the condition live with severe breathlessness and fatigue.
Although it can be connected to some other diseases, many people, like Claire, develop PH ‘out of nowhere’.
It took two years for Claire to finally receive her diagnosis, with doctors putting her symptoms of breathlessness, blackouts and fatigue down to anxiety.
It was only when she was admitted to hospital after collapsing, that further investigations led to the discovery of the disease.
She added: “I was constantly fobbed off and told nothing was wrong, but if I had been listened to, I could have started treatment sooner.
"I knew there was something serious going on and it was awful being made to feel like a liar.”
Claire receives treatment for her PH at the Royal Hallamshire Hospital in Sheffield, one of only eight specialist treatment centres in the UK.
She said the disease has given her a new perspective, and she now concentrates on living for the moment.
Claire added: “Getting PH has taught me not to put things off, as there might not be a tomorrow.
"I know I’m not going to live to become a little old lady.
"I can’t change things, and I can’t make people understand me, so I’ve stopped stressing about the small things.
"I just try and do what I can each day and do my best to go to bed happy.”
Dr Iain Armstrong, chair of the charity PHA UK (pictured above), said: “Very few people have heard of PH and those with the condition often appear well from the outside.
"It’s important for the general public to understand the challenges of living with a hidden illness, and to consider that not all disabilities are visible.
"We are grateful to Claire for sharing her story to raise vital awareness of PH.”
You can hear more from Claire in this video.
To find out more about pulmonary hypertension, please visit: www.phauk.org
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