Woman is diagnosed with cystic fibrosis aged 51

Aug 26 2010 by Debbie Hall, West Lothian Courier

cystic

BARBARA Muir has spent all her life struggling to take a breath and has been to hospital more times than she cares to remember.

Doctors have never been able to get to the bottom of why she feels so unwell all the time and have prescribed a variety of drugs and treatments to help.

But last year Barbara, aged 51, was diagnosed with cystic fibrosis – a condition that should have killed her years ago.

This is rare in itself, but even more astonishing, her sister Wilma has also been told she has the disease –and she is 59-years-old.

The mother-of-three has now been put on the transplant list for a new lung and says she is angry that had her condition been diagnosed earlier she might not be in the position she is in now.

There are many genetic mutations of cystic fibrosis and the genetic defect that leads to the disease in adult cases is often less common.

While most children and teens with the condition today will live to become adults – a relatively early death is still the eventual outcome without a lung transplant and life expectancy is around 31.

However late a diagnosis may indicate that the person has a milder form of the disease or their symptoms are different.

Barbara, from Bathgate, says she has no idea how she has managed to reach 51 having had the condition all this time and without receiving the proper treatment.

And she said doctors told her she and her sister are one of only three people in Scotland who have survived so long.

Barbara said she now wants to make people aware of the symptoms of cystic fibrosis so nobody else is misdiagnosed.

She said: “Wilma and I have been given treatment for the wrong thing and every time I went into hospital I was really ill.

“I eventually was given the genetic test and it came back positive for cystic fibrosis.

“I’ve had breathing problems all my life and I was walking about struggling for breath, although doctors thought I had bronchitis and other things.

“I was getting worse and worse and began getting back problems and sore legs walking.”

Barbara says her condition affects every aspect of her life and means she needs to take oxygen all the time.

Her sister Wilma, who lives in Fife, was diagnosed after her younger sibling and is also coming to terms with having cystic fibrosis.

She continued: “It was a big shock when I was told, I knew I was ill but it is upsetting because I might not have needed a transplant if this was known about sooner.

“I suppose you just have to get on with life but I don’t want other people to go through the same thing.

“People shouldn’t take no for an answer and if they are not happy with what doctors are telling them they shouldn’t give in.”