As a teenager at school, Charlie Clarke "felt awful" in her uniform, with a physical deformity leaving her so self-conscious that she hid from her classmates. At home, she wrapped her dressing gown tight around her chest, hoping it would conceal her condition - and didn't even tell her parents about it. Now 26, Charlie has lived with pectus excavatum - a congenital chest wall condition that can make the chest appear sunken or hollow - for years.
As she awaits surgical treatment, she said the emotional and physical effects of the condition were "unimaginable and unignorable". "Having pectus excavatum, which is a disability and a deformity under my shirt, was at times hell," she said. Her worst memories from her teenage years are of hiding in the school bathroom during PE so other girls would not comment on her having "four breasts".
"I got to a point where I felt awful wearing my school uniform because of how I looked, also because of how people looked at me and made comments about my chest," said Charlie, from County Down. The condition, which affects one in every 200 people, means Charlie's heart and lungs are compressed, which triggers breathlessness and an increased heart rate that can cause her to lose consciousness. Charlie is one of 85 people in Northern Ireland who are waiting for surgery for pectus conditions.
Many of them have been waiting for their operation for less than two years - but five have been on the list for longer than five years. The Department of Health said it acknowledged that some patients in Northern Ireland "have endured lengthy waits", adding that the volume of patients combined with "other demands on the thoracic surgery service have contributed to pressures on waiting times". But it said it had secured extra funding for more surgeries in order to reduce the amount of people on the waiting list, resulting in additional pectus procedures in the last three years.
It also said it had agreed a further proposal "which should help to reduce both the number of patients waiting and the length of their waits". If diagnosed early, patients can often be treated without surgery. But getting that early diagnosis is key - and treatment depends on the type of pectus, how severe it is and the patient's age.
Charlie said she was previously "misdiagnosed, including [being] told I had anxiety". "It wasn't until I had my shirt off in front of a clinical technician and she said they were unable to see my heart in a scan, it was compressed, and only then was I referred to a thoracic surgeon." That was when she was 23 years old, which is considered too old for non-surgical treatment. A breakthrough came when Charlie met someone who truly understood her experience.
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