Soap stars Laura Norton and Mark Jordon have opened up about the rare genetic disease with which both their children have been diagnosed.
The Emmerdale stars, known for their role as Kerry Wyatt and Daz Spencer, have two children together, two-year-old Jesse and five-month-old Ronnie. Appearing on This Morning on Monday, they revealed that Jesse was diagnosed with Usher syndrome when she was pregnant with her second child.
Usher syndrome is a rare genetic disease that affects both hearing and vision. It means that many children with the condition need to wear hearing aids and will potentially experience sight loss.
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Talking about how Jesse's diagnosis came about, Laura said: "It was the new-born screening initially that all babies have and his hearing test came back unclear, we were told it was possibly fluid but it came back later that he had moderate hearing loss. When he got his hearing aids they did blood tests - it took a year to come back with the results by which point I was pregnant with Ronnie."
At that point they were told there was a 70% chance their daughter Ronnie would also have Usher syndrome as both Laura and Mark carry the gene.
What is Usher syndrome?
According to Sense, a charity that supports people who are deafblind, Usher syndrome is an inherited condition, which means it is present from birth. It is caused by changes in specific genes that are inherited from a person's parents. It is rare, and affects between four and 17 people in 100,000 worldwide. There is currently no cure for Usher syndrome.
Changes in specific genes disrupt the health growth and development of the hair, cells or the inner ear and the cells in the retina of the eyes, which causes Usher syndrome. It can take years for symptoms to appear and is usually diagnosed in older children or teenagers.
What are the signs and symptoms of Usher syndrome?
Usher syndrome causes hearing loss which damages the inner ears - for some people this symptom can be managed with hearing aids or cochlear implants but other people lose their hearing completely.
Usher syndrome also causes sight loss through a condition called retinitis pigmentosa - this makes it hard to see when it is dark or dim, and causes loss of side vision. It happens over time until a person is left with central (tunnel) vision. Some people with Usher syndrome retain their central vision into their 50s while others lose much more of their sight in early adulthood. Eventually, most people lose most of their sight.
Other symptoms include:
- Balance problems due to damage in the inner ears
- cataracts
- leakage of blood vessels in the retina causing swelling of the macula
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