A regional newspaper editor has gone public on his private life to boost awareness of the rare illness that has affected his wife.
Worcester Standard editor James Iles and his wife Louise have suffered heartache and pain since she was diagnosed with the debilitating myasthenia gravis disease.
It is an auto-immune disease that causes fluctuating, sometimes fatal, muscle weakness.
She was diagnosed in September and the bad news came after a tragic miscarriage last July when the couple lost twin girls only six months into the pregnancy.
Louise’s illness, still not diagnosed at this point, got worse and some doctors have since said that if she had gone full term with the pregnancy, her own life could have been at risk too.
wedding day in 2003
James said the stress of the miscarriage made Louise’s condition so bad that it was finally diagnosed only after many months of misdiagnosis.
He said: “I have covered many fascinating human interest stories, both as an editor and a reporter, over the years but never imagined I would be telling my own story one day.
“The events of recent months have been very hard for my wife and I to come to terms with but, if by telling our story, we help just one person get diagnosed with MG or help vital fund-raising efforts, then it will all have been worth it.”
MG is caused by a breakdown in communication between nerve and muscle which results in a loss of effectiveness of the muscle and it can vary greatly depending on levels of physical exertion, the onset of infection or stress of any kind.
Simple things like eating food, lifting arms, speaking to friends, or laughing and smiling become impossible- hence MG’s nickname which is the ‘rag doll’ disease.
Treatment includes the use of steroids and after three weeks in hospital following her diagnosis, Louise was home and taking her first tentative steps towards leading a normal life again.
Click here to read James’s feature from the Standard.