woman's hands lock on to anything she touches due to rare condition

A teenager whose hands get stuck on anything she touches, Louise Allen, 19, suffers from a progressive muscle wasting disorder called Myotonic Dystrophy which causes prolonged contractions affecting her lower legs, hands, neck and face.

The condition is part of an ongoing storyline in the popular soap Coronation Street as character Steve McDonald awaits diagnosis of MD.

Now Social Skills student Louise, from Bradford, West Yorkshire, has spoken for the first time about living with the condition affecting the popular soap opera's loved mini cab driver.

 

She said: “Since December 2015, my hands have been locking every minute of every day that I’m awake.

“When I saw the storyline on Coronation Street, I was shocked, but now I’m fascinated and make sure I don’t miss an episode.
“I relate to Steve’s fear of the unknown, as I don’t know what’s coming next.”


The first time Louise’s hands locked was in year 11 at school, but she brushed it off thinking it was just because it was a cold day. 

By February 2015, it had started happening more often, and she had no idea why.
“My hands would get stuck around everyday objects and I wouldn’t be able to get them open,” Louise said.



 

“It would happen when I was trying to open a bottle or hold the remote control, and could last for anything between a few seconds to five minutes. 

“I thought ‘OK this isn’t right,’. It was very frightening and weird.”
In May 2015, Louise was worried that it was happening quite frequently.


She went to see her GP, who sent her for tests at St. Luke’s Hospital, Bradford. 

These included blood tests, an ECG and an electromyography where an electrode needle is inserted into the leg muscle, to measure the electrical activity in the area. 

Two weeks later, in April 2016, she was diagnosed with Type 1 Myotonic Dystrophy, which particularly affects the lower legs, hands, neck and face.

“I was confused when they told me and just thought ‘now what’. They told me it could affect my heart and lungs and I freaked out,” she said."They said there isn’t a cure but that they could help me to control my symptoms.
“When I got home, I curled up and just had to be on my own to figure things out.” 


Doctors explained that it’s an inherited condition and that it is most likely that one of her parents, both in their 50s, would have it, although in some cases parents carry a very slight genetic change that will never give them symptoms.

Louise said her dad, self-employed mechanic Mark, 55, doesn’t want to be tested, but her 54-year-old mum, student data manager Lynda is soon to be tested. 

Her brother, user researcher Jamie, 26, is currently undecided about whether to be tested himself.