The Norfolk teacher raising awareness of her daughter's rare lung disease
- Credit: PHA UK
A south Norfolk teacher is raising awareness about a rare lung disease that affects her daughter.
Jane Price, the deputy headteacher at Harleston Primary School, wants to spread the word about pulmonary hypertension (PH), in support of her seven-year-old daughter Connie.
Pulmonary hypertension is a serious disease that causes high pressure in the blood vessels connecting the heart and lungs.
It leaves Connie breathless, unable to keep up with her friends, and always tired. She is one of just 300 children in the UK with PH.
Connie was diagnosed at three and has previously had a medical line inserted in her heart to deliver life-saving therapy. She now takes drugs daily to stop the disease from worsening.
Ms Price, a mother of three, said: “It took a long time to find out what was wrong with Connie, I knew something wasn’t right but we were constantly told by doctors that everything was fine.
“We were floored by the diagnosis. It just felt so dark to be told that your three-year-old child has such a serious illness.
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"Connie knows that her lungs don’t work properly and that she has a ‘naughty’ heart. And she understands to some extent that the doctors can’t fix it."
Connie receives treatment from Great Ormond Street Children’s Hospital in London and two years ago underwent pioneering surgery to help blood flow around her heart and lungs. Her only other option would have been a lung transplant.
The 'Potts shunt' surgery has only been carried out on one other child in the UK.
Iain Armstrong, chair of the PHA UK, said: “Because PH is so rare, with symptoms so like those of more common conditions like asthma, it can take a long time to diagnose."
Ms Price said: “Having a child with PH is devastating and it does make me feel angry.
“But Connie is such a happy, giggly, little girl who absolutely loves to go on adventures, and her illness has not stopped us living life.”
Although there is no cure for PH, Connie’s heart function is improving, and the family remains positive about the future.