Muscular Dystrophy UK has praised ITV’s Coronation Street for its “sensitive, accurate” storyline about muscular dystrophy.
“It’s good to see muscular dystrophy portrayed on a national TV show. As well as educating people, I hope it raises funds for research to help future generations. It was an honour to be involved in the writing process and I hope that by sharing our story we might be able to help other families.” – Sarah Innocent, Peer Support volunteer, Muscular Dystrophy UK
This week, viewers will see Steve McDonald – played by Simon Gregson – discover that both he and his unborn children could inherit the genetic condition myotonic dystrophy. The storyline runs from this evenings editions through to October 28th. ITV Granada, who produce the programme at MediaCity in Salford, approached Muscular Dystrophy UK to advise the scriptwriters and production team about what Steve, Michelle and Leanne may be going through.
The charity arranged for one of their peer support volunteers, Sarah Innocent, whose husband Matthew has myotonic dystrophy, to share her very personal story with the researchers. They were so grateful for her candour. She and Matthew have a daughter, Amelie. Sarah talked about their experience of early pregnancy genetic tests and the difficult decisions they have had to make.
“Our little girl, Amelie, was already two-years-old when Matthew was diagnosed with myotonic dystrophy. We were referred to a genetic counsellor, who explained our options for testing Amelie, as well as family planning for the future. We walked into the room adamant that we were going to get Amelie tested as soon as possible. But after talking for two hours we realised we didn’t want to know if Amelie had the condition. After coming to terms with Matthew’s diagnosis, we decided to try for more children. But, sadly, prenatal testing revealed bad news and we have had two failed pregnancies. We’ve decided not to try again for further children and are enjoying being a family of three.” – Sarah Innocent, Peer Support volunteer, Muscular Dystrophy UK
Sian Rixon, 37, has a six-year-old son, Finn, and a daughter, Emmie, five, who has rare muscle-wasting condition myotonic dystrophy. In 2015 she started the Congenital Myotonic Dystrophy Fight Fund. Set up with three other families, the aim of the fund is to raise funds strictly for research into treatments for congenital myotonic dystrophy.
“We are really excited to see muscular dystrophy on TV as it will raise awareness of the condition, which can only be a good thing when trying to raise funds. Myotonic dystrophy is a little-known condition , even though it is one of the most common forms of muscular dystrophy, so I’m eager to see it in the limelight.” – Sian Rixon
If you would like information or support on muscle-wasting conditions, please call the Muscular Dystrophy UK Information and Support Team on the free helpline: 0800 652 6352, Monday to Friday, 8.30am-6pm, or email via the link. Myotonic dystrophy is one of 60 muscle-wasting conditions that causes progressive weakness in the body and organs. It currently affects around 7,000 people in the UK.
The condition is caused by ‘unstable mutations’ that tend to get worse when passed from generation to generation. It follows a ‘dominant’ inheritance pattern, which means that on average half of the children of an affected person will be diagnosed. Both men and women are equally likely to be affected and to pass on the disorder. In the show, Michelle is devastated when she learns there’s no cure or treatment for myotonic dystrophy.
“I’m proud to be part of a storyline that will highlight little-known genetic conditions like myotonic dystrophy and bring them to national attention. As a dad to three boys, it’s reassuring to know there are charities like Muscular Dystrophy UK out there who can explain genetic testing and help families through the process.” – Simon Gregson