Father’s campaign against ‘ignorance’ of deadly disease
ABEREAVED father who has campaigned for more than 25 years to get justice for his son has called on the NHS in Wales to brief doctors regularly about the rare disease which killed him.
Robbie Powell, of Ystradgynlais in Powys, died in 1990 at the age of 10 after doctors failed to recognise that he had Addison’s disease.
The disease – also known as primary adrenal insufficiency – occurs when the adrenal glands are damaged and cannot produce enough cortisol – a life-sustaining hormone. It can be fatal if not treated.
Initial symptoms include chronic, worsening fatigue, muscle weakness, loss of appetite, weight loss and recurrent abdominal pain.
Later, those affected can experience nausea, vomiting, diarrhoea, low blood pressure causing dizziness or fainting, irritability and depression, and a craving for salty foods due to salt loss.
A tell-tale sign of Addison’s disease is a darkening of the skin.
Robbie’s father Will Powell is concerned the lives of more children are at risk because some doctors do not register the possibility that a sick child may have Addison’s disease.
In 2013 Dr Ruth Hussey, the chief medical officer for Wales, sent a warning letter on Mr Powell’s prompting to doctors five months after 12-year-old Ryan Morse also died from Addison’s disease.
Now Mr Powell wants such a letter to be sent out annually. He said: “I am hopeful that highlighting publicly the vague symptoms of Addison’s disease will save lives in the future.
“Lives may have been saved in the past had the Addison’s warning letter been circulated shortly after Robbie’s death in 1990 and again annually on the day of Robbie’s death or his birthday.
“I truly do not want to learn of any other children or adults dying of this treatable disease because of the ignorance of the medical profession.”
A Welsh Government spokeswoman said: “We will consider the possibility of issuing a further letter on Addison’s Disease to health professionals.
“Although it is rare, it can be difficult to diagnose and healthcare professionals must remain vigilant for patients who display symptoms associated with this disease.”