Living with a heart defect that has been with you from birth severely affects your life and support is lacking, it has been warned.
That is the message from a Dundee man who has been raising awareness and working to improve services for adults with congenital heart problems across Scotland.
Scott Alexander, 38, was diagnosed with his heart condition when he was three years old.
He has undergone repairs to holes in
his heart and leaking valves and is on seven different medications to help him survive.
'Really tired'
He has been credited with helping to get the first dedicated unit to treat adults with such problems set up in the west of Scotland.
An event to raise awareness and celebrate the achievements of congenital heart patients such as Mr Alexander was held at Dundee City Chambers on Friday.
Mr Alexander told the BBC Scotland news website that having his condition severely impacts on his life.
"Some days I get really tired and drained," he said.
"I get out of breath and that sometimes can trigger my rhythms.
"If it does kick off I can go anything from 105 beats per minute to 250 beats per minute, so that's quite a scary thing."
His condition has also had an affect on his wife, Geraldine, and five-year-old daughter Clodagh.
Mr Alexander said: "I'm taking each day as it comes basically.
"I want to try to do more with my family - go out places, hopefully go on holiday abroad - it just all depends on my health."
Mr Alexander said his main aim was to inform the public that those with congenital heart defects do not always die at a young age but they are unable to have a normal life.
He is also campaigning to have small treatment units set up around Scotland.
Support call
Professor Stuart Pringle, a cardiologist at Ninewells Hospital, agrees more needs to be done to support patients across the country.
He said: "There is a misconception that congenital heart disease is all about children and young people.
"Obviously now with improved techniques people are surviving into adulthood and these patients have a need that's not being met by the health service.
"The health service tends to be geared up around these people being children, and now they're adults and having children of their own and obviously they've got special needs."
Dundee East MSP Shona Robison was one of those paying tribute to Mr Alexander's work.
She said: "It was in no small measure down to Scott that we now have the west of Scotland facility.
"A special facility that will ensure that people are given the right support from an early stage so that they get the services and treatment they require.
"I know that Scott is very keen to make sure that no matter where you live in Scotland, if you have a congenital heart problem you get the right intervention.
"I would pay tribute to the work that he's done and certainly support that."
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