A Galway woman has urged the government and HSE to bring the treatment for Friedrich’s Ataxia into Ireland.
Aoife Quinn, 23, was diagnosed with Friedrich’s Ataxia, a rare genetic neurological condition that targets the body’s nervous system, leading to problems with walking and balance, slurred speech, and cardiac complications.
She received her diagnosis at the age of 18.
The disease has reduced her life expectancy to between 30 and 40 years.
Aoife is amongst 200 people in Ireland battling the condition, reports Galway Beo.
A treatment does exist, however.
Aoife, who is from Oranmore, is appealing to the HSE and government to approve a medication called omaveloxolone (Omav), which she believes could prolong her life, for use in Ireland.
It is not currently accessible in the country.
Speaking on RTÉ Radio 1’s Liveline about how the disease affects her, she said: “At the minute my balance and co-ordination is affected but eventually my speech, my hearing, my sight will be affected.
“People have died from this, it’s awful.
“It’s just a matter of time before my body starts to deteriorate.”
While discussions are underway between the HSE and pharmaceutical firms regarding bringing omaveloxolone into Ireland, Aoife and fellow sufferers continue to deteriorate.
She added: “I’m really, really praying that it comes soon.”
Aoife is scheduled to address Leinster House on Wednesday to urge that negotiations are completed as swiftly as possible, for her benefit and that of others living with the disease. “Time is not on our side”, she said.
Aoife launched a petition to highlight her circumstances and gather support.
Currently, it has attracted more than 16,000 signatures.
You can support her campaign here.
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