I’m hoping for new drug to be approved for my rare condition, says Belfast woman


A 44-year-old Belfast woman has told of her hopes for a new drug to be approved for Northern Ireland after she was diagnosed with a rare condition.

Clare Sheeran, above, from south Belfast said: “This year, at the age of 44, I was diagnosed with a rare condition called Friedreich’s ataxia. Only around 200 people in Ireland have the condition, it is a progressive disease – meaning that it gets worse over time and can lead to wheelchair use, affected speech and can be life-limiting.

“We always thought my dad would be a carrier as four out of his five siblings had the condition (although he didn’t). But after genetic testing we found out that my mum was a carrier too, which was a surprise as there was no history in her family.

“Statistics reveal approximatelyn one in 60 people are carriers in Northern Ireland, but doctors told me that they believe that the numbers may well be higher,but that people aren’t aware they are carriers.

“But I am very positive! The first ever drug to treat this condition has recently been approved in the United States. The US Food and Drug Administration (FDA) recently approved the drug Omaveloxolone with the brand name Skyclarys. People with the condition, who are over 16 years of age in America already have access to Skyclarys.

“The drug is currently going through a review by the regulatory agency in Europe, the European Medicines Agency (EMA). If the EMA approves Omaveloxolone, this will not automatically result in approval in the whole of the UK, but it will result in approval in Northern Ireland.

“There may still be a bit of a battle in terms of availability through the NHS. As with other rare diseases, the NHS has to justify funding for something that is uncommon,” said Ms Sheeran.

“But in 2022, the then Health Minister Robin Swann launched Northern Ireland’s first ever Rare Diseases Action Plan, which will lend leverage to access to medicines/drugs. So the future is bright.”