This week, viewers will see much-loved character 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 Monday (10 October) until 28 October.
We have praised Coronation Street for its “sensitive, accurate” storyline.
ITV approached us to advise the scriptwriters and production team about what Steve, Michelle and Leanne may be going through. In our advisory role we:·
• shared our information about myotonic dystrophy, family planning and inheritance
• advised the ITV team to consult with a genetic counsellor
• connected the researchers with one of our families
• review script
• organised for our helpline number to go on the advice line after the programmes air.
We arranged for one of the charity’s 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.
Sarah, pictured with her family, said:
“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.
“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.”
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.”
You can read her story here.
Speaking about the storyline, actor Simon Gregson, who plays Steve McDonald, said:
“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.”
Sal Lalji, External Affairs Advisor, said:
“We are delighted that Coronation Street approached us to work with them in developing this storyline. We are very happy and are pleased to see such an accurate and sensitive portrayal of this progressive condition.
“It’s extremely important that programmes like Corrie are taking such a debated issue and bringing it to the fore, as well as raising awareness about rare conditions like myotonic dystrophy.
“In the show, Michelle is worried because she doesn’t know what to do or who to talk to about family planning issues. This is not new to us, and is something we know families struggle with every day. We provide a dedicated helpline to help individuals and families navigate through this emotional minefield, as well as putting people in touch with others who have been through the same experiences.
“We would encourage anybody needing to talk to contact us for support.”
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 (Mon-Fri, 8.30am-6pm) or email at: email@example.com.
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. But Muscular Dystrophy UK’s CEO Robert Meadowcroft, says there is good reason to be hopeful. Robert said:
“Research into all types of muscular dystrophy is making rapid progress with a number of new potential treatments offering the kind of hope that would not have been thought possible even 10 years ago. These potential new treatments raise the prospect of being able to significantly reduce the severity of symptoms, thus lessening the enormous burden the condition places on those affected and their families.
“Thanks to the support of families and donors, for more than 50 years we have played a vital role in funding the research and clinical evidence underpinning developments to date. One of the challenges we now face is to ensure continued funding for this lengthy research.
“That’s why we set up the Myotonic Research Breakthrough Fund – to ensure that scientists can continue to identify and develop possible therapies.”
To support the Myotonic Research Breakthrough Fund, you can make a donation here