This section of the website is entitled ‘Your voice‘ as it is for the publishing of your thoughts on anything relating to your experiences and journey with ILD. Feel free to submit your comments, letters or links to published articles by using the Contacts section of the website.
It was as if I’d become a member of an elite select group that was spoken of in hushed tones and secrecy, the ‘ILD Society’. In September 2013 I was diagnosed with the illness and my wife and I left the hospital benumbed and devastated. While we’re all unique the emotions we experience after diagnosis follow a similar pattern and have been well documented. Nearly a year passed and I hadn’t heard anything from the hospital, so I decided to contact them about a further appointment. If I hadn’t would they have forgotten about me, let nature take its course perhaps? During this period I did the usual internet searches regarding the condition and rather than the morbidity of most information I found quite a different outlook, shown by certain pulmonologists in The States. A pro active positive one, non flattering, yet optimistic. I wondered what was happening here, it seemed stuck in the dark ages.
After my second appointment a year later things began to change, from ‘nothing we can do’ to something, from an acceptance to a defiance, from placid to active. New drugs and treatments became available, more research, more awareness and optimism. This ‘secret’ and select group of patients were now nearly mainstream, though still the Cinderella of respiratory ailments.
In Tooting, South West London, St. Georges Hospital set up an eight week, 16 sessions Pulmonary Rehabilitation (PR) research programme specifically aimed at patients with ILD. Its purpose to determine if ILD patients responded better to specific forms of PR. Preliminary results were presented at the American Thoracic Society (ATS) conference in 2016. Interim research outcomes proved beneficial to those patients who attended regularly. I took part in the study and from this positive step we formed a support group which first met in September 2016. From the outset the group intention has been to help all ILD patients and their carers by providing advice from visiting professionals and clinical specialists, by networking and providing information on new developments and some much welcomed chat and banter over tea and biscuits! Through this support group one began to realise the immensity of our challenges and how our rare chronic illness is perhaps not so rare!
The variety and manifestations of ILD, the numerous ways patients manage themselves, the different types of life-style and locations, all these factors personalise our condition. In my daily struggle for survival this knowledge has given me a resolute compassion which, perhaps, only those with chronic illness’s can appreciate. What works for one person might not work for others. As we have no answers, only examples, our elite community needs to hear them and find patterns that may lead to better treatments and hopefully a cure.
Since that dreadful day of diagnosis I’ve learnt much which I try to apply to my life, not always successfully. How to live as best we can seems the priority. We can’t tame the beast but we better learn how to ride it. Quality of life over quantity and working within one’s parameters. Setting targets for yourself (great way to exercise the brain cells) and adjusting to the varying stages of the illness. Being alone in your intimate endeavours while emotionally together with others. It might take double the time to do certain tasks, one might cough and splutter when heavily exerting oneself, but having a go means one is still in the saddle. Our body tells us things that the medical profession are only beginning to fathom. By being pro active, no matter at what level,we can contribute to our own well-fare and the advancement of care. Our experiences and choices, no matter how arduous or traumatic, how long or short, are no longer insignificant. We’re all pioneers whether we like it or not, we owe it to those gone before us, to ourselves and those to come. ILD progression is stealthy and mute, we patients must give it a voice then silence it forever.
The following letter was submitted to the Evening Standard in April 2017 and was published on 26 April 2017 entitled “Pollution affects the health of our lungs“. The complete submission including a poem written by Lesley has been reproduced below.
To The Evening Standard Editorial Department
We’re very pleased to see the coverage you have been giving to the issue of air pollution in London and the Mayor’s campaign to reduce this.
London’s air quality greatly affects all those with respiratory problems and the many people with the different types of interstitial lung disease certainly feel the daily variations and different impacts of air quality.
Idiopathic pulmonary fibrosis (IPF) has the worst prognosis of all restrictive lung conditions, collectively known as Interstitial Lung Disease (ILD), with a median mortality rate of 2-5 years from the date of diagnosis. Your recent efforts to shed light on this little known and little understood disease, including the news story about opera singer Emily Estelle’s father, is most welcome and timely when one considers the increased publicity of air quality in London and the general rise in childhood lung related illnesses.
This Cinderella of progressive, incurable terminal conditions is, however, not going unchallenged. In 2015 St. Georges Hospital, Tooting set up a Pulmonary Rehabilitation research programme to help patients living with ILD. The primary purpose of the programme was to better understand this set of lung conditions and specifically to look at what types of exercises are beneficial, which patients can undertake to help preserve lung function. The programme consisted of a series of physical tests and exercises, designed to promote lung health, pulmonary muscle strengthening and improved breathing techniques.
The program was supported by highly qualified and motivated staff, including physiotherapists, consultants and researchers. The results and efficacy of the trial were illuminating and proved to be beneficial for patients.
These patients have now established an ILD Support Group (www.ildgroupstgeorges.com), based at and supported by St George’s Hospital and is further supported by the British Lung Foundation (BLF.org.uk). The group meet each month to hear talks from clinicians and invited speakers on all aspects of ILD, how best to help patients themselves and their carers to understand the condition and help maintain lung function and general health. Group members also support each other by sharing their own experiences and stories including tips and pitfalls they have experienced along the journey.
Prior to 2016 it was thought that approximately 15,000 people lived with IPF in the UK. However, in 2016 research by the British Lung Foundation found that 32,500 was a more accurate figure (over twice the original figure!).
Coupled with this upwardly revised figure of 32,500 and with air quality in London continuing to deteriorate at an alarming rate we can only anticipate worsening lung health in the years ahead and particularly for all Londoners across all age groups.
When I was diagnosed in 2013 there was the “go home and wait to die,” unwritten finality. Now there are support groups, 2 new drugs to help reduce the progression of the disease, where before there were none, helpful life-style techniques and a part of the NHS that deserves praise.
Along with the British Lung Foundation we strive to increase awareness and improve the situation for those living with this condition.
Finally I enclose a piece written by a member of our support group which tries to convey what it is can be like living with IPF; our hope is others will never have to.
J. Conway and L.Gresswell.
St. George’s hospital, ILD Support Group representatives.
The types are many and varied, once you are in the know,
consistent signs confirm its presence, this struggle for air,
though its early manifestations stubbornly refuse to show,
until you’re gasping hard with non pink lungs threadbare,
then the journey begins, all well charted to a certain stage,
after which mother morphine and tight chest steel bands
your template, a valedictory for the battle you’ve waged,
mirror revealed in my blue veined river delta thin hands;
my withered bronchial tree sapped by a fibrotic process,
bruised blood flow and clubbed nails, are my scar signs,
others varied aspects display, all beyond medical redress,
as this condition is too subtly rare for our emotive times;
who cares if it hits you first going up stairs or an incline,
not a chronic breather whose progress is speed of decline.