'People with rare conditions are just being forgotten by system'
Published 10/06/2014 | 02:30
WHEN Jordan Egan travels to Leinster House today to deliver a petition calling for equal rights for patients with rare medical conditions, it will not be an easy journey.
The 17-year-old will travel in the car with the seat fully reclined because of ongoing chronic pain. Afterwards, it will take Jordan days to recover from the severe fatigue the ordeal will inflict on her young body.
Jordan has a rare genetic disorder called Ehlos Danlos Syndrome (EDS) which affects the collagen in the body and means that joints are much more mobile than in other people.
She is currently tube-fed, unable to stand upright for more than a few minutes at a time and suffers from a constant headache.
But she never complains.
The gruelling trip to Leinster House is a price the determined young teenager from Rathcrogue, Co Carlow, is willing to pay in order to have her voice heard.
Her ordeal began when, as a bright, bubbly 15-year-old, Jordan had a simple fall in the back garden during a soccer match with her brother and cousin, triggering an injury that to her would prove to be far more serious than it should have been.
Before this, it was not known that she had EDS – and that her mother, sister and three brothers had a milder variation.
It meant that in the fall, Jordan's neck bent back more severely, injuring the nerves.
The courageous teenager now has Autonomic dysfunction, secondary to EDS – which means that her breathing, heart rate, blood pressure regulation and digestion are not functioning normally.
She has been unable to attend school for the past year but still hopes to sit her Leaving Cert next year.
"She's the most amazing person I know," said her mother, Karen Egan, who appeared with her daughter on the 'Miriam Meets' radio programme last summer, when they released a song, 'Easy For An Angel', which went to number eight in the Irish download charts.
They had hoped to raise enough money to send Jordan to London for treatment.
There are no consultants in Ireland who are trained to treat EDS and doctors here tell her there is nothing they can do for her. "If she presents at A&E, doctors say they can do nothing except observe her," said Karen.
However, Jordan – who is fiercely interested in current affairs – has found out that she is entitled to treatment under EU law, which states that patients with rare diseases should get the proper advice and ongoing medical treatment. But Ireland is in breach of regulations.
Today at Leinster House she will meet a delegation, including Ministers Brendan Howlin and Kathleen Lynch, to hand over a petition of more than 6,500 names to demand equal rights for people with rare medical disorders.
"There are huge inequalities in the system and people with rare conditions are just being forgotten," said Karen.
"Jordan's system is being impacted more and more day by day – we need to get a handle on this and get her proper treatment," her mother said.
"It's a really unenviable situation to be in. The last thing anyone with a sick child wants to be told by a doctor is that there is nothing they can do – or that we probably know more about the condition than they do," she added.