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PAH won’t stop me living my life to the full

NOP 19/0447f(1)a April 2019
This article was developed in collaboration with Actelion Pharmaceuticals UK who also provided funding.
Contributors to this article did not receive payment for their involvement.

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Tess Jewson

PAH Patient and Professional Musician

Tess Jewson was just 17 when she was diagnosed with pulmonary arterial hypertension (PAH), but she’s refused to let this rare disease stop her living her life to the full. 


Music teacher, Tess Jewson, was just 17 when she was diagnosed with PAH. She had always suffered with asthma as a child but, during a night out with friends, began to feel dizzy and severely out of breath. After doctors ran a series of tests, Tess was told that a congenital heart condition had led to pulmonary hypertension (PH) with Eisenmenger syndrome — and that she might have only months to live. 

That was 11 years ago.

Tess says the medication she has been prescribed, the managed care she receives and the support from her family and friends have all helped change that dire prognosis. 

She also thinks her positive mental attitude has made a difference. After her initial diagnosis and months of successful treatment, she was discharged from hospital. She packed her bags and went to university to study music. “I had a place at Southampton and nothing was going to stop me getting there,” she says. 

Click here to discuss with an expert panel the importance of early diagnosis and how to manage general health and wellbeing whilst living with PH.

I can’t work full-time because of PAH

Even so, her life did drastically change. She had to give up the trumpet (“That was my main study — so having it taken away from me was terrible”) and after going out with friends she had to rest the next day. 

She also isn’t able to work full-time and says it can be frustrating that the public and even some clinicians don’t know enough about the condition and how chronic it can be, especially as it’s an invisible illness for many PAH patients. 

Read more: Time to act – Patients with PAH need earlier referral and diagnosis

“PHA UK offer great support”

Despite these challenges, Tess is keen to allay the fears of anyone newly diagnosed with PAH. “There is very good support available,” she says. “I’d direct people to PHA UK — the Pulmonary Hypertension Association — in the first instance. Also, appropriate treatment and ongoing management of the condition with your healthcare team and support network can now help you live the life you want to live. Look at me: I’m still going strong. ”

Don’t let it hold you back. As I always say: “I don’t live with pulmonary hypertension. Pulmonary hypertension lives with me. ”

This Rare Disease Day Actelion is supporting a number of initiatives. Check out any of the following hashtags to see what else is happening this #RareDiseaseDay #RareDiseaseDayChat #ShowYourRare #RareReality

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