Family want to boost training for doctors Husband died from a rare condition which is hard to spot
A grieving wife is fighting to raise awareness after her husband died of a rare condition that has only affected another four people in Scotland.
Derek Rennie passed away in November last year aged 63 after being diagnosed with pulmonary hypertension.
Derek, from East Calder, was first diagnosed with a respiratory condition in December 2016 and deteriorated quickly meaning he needed continuous oxygen while at home and many hospital admissions.
Eventually, after being transferred to the Queen Elizabeth in Glasgow - the only hospital in Scotland that deals with the condition - Derek was diagnosed with pulmonary venous occlusive disease, an even rarer form of pulmonary hypertension.
Despite treatment Derek sadly only lived for just over two months before passing away in November 2017 at St John’s Hospital.
His heartbroken family now want to raise awareness of his condition so that members of the public - and health professionals - are better informed and know what to look for.
The family, including Derek’s daughters and three of his young grandchildren, also took part on the Edinburgh Kiltwalk last month, raising £1500 for the Pulmonary Hypertension Association.
Yvonne said she is also spearheading a campaign that offers free training to doctors to help them spot symptoms of the disease, which include chronic fatigue, shortness of breath, chest pains, fainting and swollen ankles and legs.
This ties in with Pulmonary Hypertension Awareness Week, which runs from October 22 to 28.
Yvonne said: “We have all been devastated by Derek’s death and just want to make sure no other family goes through what have. I want to raise awareness because it is so rare it can be misdiagnosed.
“Also, because of that reason I felt quite lonely, there is nobody to speak to who has gone through the same thing.”
She continued: “Pulmonary hypertension is very rare and can be fatal as there is no cure. Only 7000 people in the UK suffer from it and my late husband had an even rarer form of this condition called pulmonary venous occlusive disease and was one of only five people in Scotland and the first for Lothian Health Board. As it is so difficult to diagnose and is often treated as COPD as it was in my husband’s case and he only had two months after correct diagnosis.”
Pulmonary hypertension causes the blood pressure in the arteries of the lungs to elevate, putting stress on the heart and reducing the amount of oxygen that is able to reach the tissues of the body.
While there is no cure, there are effective treatments that can help sufferers if they are diagnosed early.
For more information visit http://www.phauk.org/ph-awareness-week/ or www.phauk.org.