To mark Undiagnosed Children’s Day and raise awareness of young people with rare conditions, Genetic Alliance UK hosted a Scottish Parliament reception event las week.
A faulty gene means that the cilia do not move and cannot fulfil their function of clearing the airways, causing recurrent infections leading to irreparable lung damage if left untreated. Daily airway clearance, prophylactic antibiotics and prompt treatment with targeted antibiotics when infections occur are part of Julia’s daily life with PCD.Mum Susi said: “In Julia’s case, she was four-and-a-half years old.
“Finally, someone suggested PCD. Whilst considering this, daily physiotherapy and antibiotic treatment for her recurrent infections were started, slowly improving her condition.“Scotland’s only diagnostic machine for PCD was nonfunctional at the time, but the trip to Royal Brompton London was validated by the impact it had on Julia.
“That is why it is so important to hear the experience of young people like Julia. We must make sure that services and policies for rare conditions, such as Scotland’s Rare Disease Action Plan, meet the needs of the young people living with them.”
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Source: Daily_Record - 🏆 9. / 89 Read more »