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Chelmsford music therapist calls for more understanding of rare disease

26 Oct Chelmsford music therapist calls for more understanding of rare disease

A Chelmsford music therapist with a life-shortening lung disease is backing a national awareness week to help more people understand her condition.

Tess Jewson, 30, was diagnosed with the rare condition pulmonary hypertension (PH) when she was 17 – after years of her symptoms being dismissed as asthma.

PH affects just 8,000 people in the UK. It causes high pressure in the pulmonary arteries – the blood vessels connecting the heart and lungs – and leaves Tess with severe breathlessness, fatigue and chronic pain.

She takes strong drugs and has home oxygen to help manage the condition, but there is no cure. Eventually, PH can cause heart failure.

Tess is sharing her story in support of PH Awareness Week, which takes place 1-7 November and has been organised by the national charity PHA UK.

“Pulmonary hypertension totally changed my life”, she said. “My symptoms affect me every day and I never know how I am going to feel when I wake up. Having PH is like a roller-coaster; it can be overwhelming at times, and I do feel like a burden. But I still love life, I still have aspirations, and I’m determined to do what I can.”

Tess was born with a hole in her heart and also has the heart condition Eisenmenger syndrome. After years of abuse from strangers, she is calling for people to be more understanding of hidden disabilities like hers.

“PH is invisible, and I like to dress up and put make-up on. Just because I’m sick, I don’t have to show the world I am sick – but people do judge me.

Even though I have a blue badge, I often get abuse when I park in a disabled bay, and I’m always told I look ‘fine’. But
“I’m fighting this illness, and trying to get on with life, but I’ve had to develop a thick skin because of those out there who are arrogant and just not aware of all these disabilities that can be invisible.”