I am currently Chair of a small but very impactful rural women’s group in a little village in county Derry called Swatragh and I would like to raise awareness of a very distressing and under diagnosed medical condition called Idiopathic Pulmonary Fibrosis. Let me explain….
Idiopathic means there is no known cure;
Pulmonary refers to the lungs;
Fibrosis means scarring or hardening. Scary stuff! Sadly, few people are aware of this disease
Sadly, N. Ireland has the highest prevalence of IPF in the U.K. I.P.F. is a devastating disease in which the lung function declines inexorably so that simple everyday activities that so many of us take for granted such as putting on socks, showering or toileting become mammoth tasks. After diagnosis, life expectancy is 3-5 years! Try to visualise yourself or a family member suffering from it…
Worse still, there is no cure.
Treatment merely slows down the progress of the disease and there are currently only two drugs, oral anti-fibrotic medications- Pirfenidone and Nintedanib available to alleviate symptoms and prolong life between 3 and 5 years but, unfortunately, they do not reverse the lung damage already done. Also, not every sufferer is prescribed these drugs even though, believe it or not, IPF is more common than cancers such as Ovarian and Leukemia. Currently, these drugs can only be prescribed when your lung capacity dips to 80% or below. Consequently, many sufferers are forced to buy the drugs directly from India at a personal cost of £5-£6K! Again, try to visualise yourself or a family member in that position!
Although 1200 people in N. Ireland suffer from this disease, unbelievably, there is only one specialist Centre in the north of Ireland, based in Antrim Area hospital and only two Consultant Respiratory physicians, and a specialist ILD nurse. (In contrast, in England, apparently there are multiple specialist Centres). There are no drug trials in operation in N. Ireland but there are in the rest of the UK.
The respiratory staff from Antrim Area hospital in 2015 formed a fabulous Support Group called The Northern Trust Pulmonary Fibrosis Support Group which has proved to be extremely helpful in so many different ways. The Chairman of this group, Tom McMillan, is the primary carer for his wife, who also suffers from this condition. The Support group would like people who could help in any way or who require support to log onto their website
This guest article was contributed by Deirdre Bradley who is the chair of one of our members, Granaghan and District Women’s Group. If you would like to contribute a guest piece please contact Megan McClure Botha on firstname.lastname@example.org