Harleston teacher raising awareness of pulmonary hypertension
A Harleston teacher, whose young daughter lives with a rare lung disease, is backing a national awareness week to help more people understand her condition.
Jane Price wants to spread the word about pulmonary hypertension (PH), which affects her seven-year-old daughter Connie.
The serious disease, which affects just 300 children in the UK, causes high pressure in the blood vessels connecting the heart and lungs.
Connie was diagnosed at the age of three and takes a cocktail of daily drugs to stop the disease getting any worse.
Mrs Price, deputy headteacher at Harleston Primary Academy, is sharing her family’s story in support of PH Awareness Week, which runs from November 1 to 7 and is organised by the national charity PHA UK.
She said: “It took a long time to find out what was wrong with Connie as, although I knew something wasn’t right, 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.”
The mother-of-three is keen to raise awareness of PH so that more people understand the disease.
“It is really difficult to get across what’s wrong, because, for all intents and purposes, Connie looks just like any other little girl,” she said.
“She 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 – but they are doing everything they can to make sure it doesn’t get any worse.”
Two years ago, Connie underwent pioneering surgery to help the blood flow around her heart and lungs. The ‘Potts shunt’ surgery had only been carried out on one other child in the UK before, and the operation enabled Connie to come off her intravenous medication and take tablets instead.
Although there is no cure for PH, Connie’s heart function is improving, and the family remain upbeat.
“Having a child with PH is devastating and it does make me feel angry,” added Mrs Price. “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.”