Inspirational Matt gives back
A SWORDS man living with a rare and chronic illness in his lungs for the past seven years and who received amazing support has given his full backing to an awareness campaign.
Inspirational Matt Cullen has written about his battle with idiopathic pulmonary fibrosis (IPF) in a special publication launched to coincide with the 15th anniversary of the Irish Lung Fibrosis Association, which helps people with the disease in Ireland.
IPF is a rare, chronic, progressive and terminal disease, which involves the development of scar tissue (fibrosis) in the lungs. Patients with IPF develop extreme breathlessness, fatigue, cough and ultimately respiratory failure, often requiring them to depend on oxygen therapy 24 hours a day.
IPF World Week, which runs from September 16 to 24, aims to raise awareness of the condition, shed light on the services and treatments available to people suffering with IPF, and to create an international network of support.
To commemorate IPF Week and its 15 th anniversary, ILFA will launch a special edition ‘ILFA 15 ’ magazine, which celebrates the advances in treatment and patient care over the past 15 years, with special input from Irish patients, family members, carers, doctors and ILFA members.
In his article, patient advocate and fundraiser Matt Cullen explains how ILFA helped him and outlines the work he has been doing to promote sharing of information and support services.
He describes how his first encounter with the Irish Lung Fibrosis Association began in early 2013 when he was going through a very difficult time with IPF.
Matt claims it is a credit of the Irish Lung Fibrosis Association and the patients and carers of the Dublin Patient Support Group who helped him enormously to deal with his health issues.
Matt was diagnosed with IPF in 2010. He experienced fatigue, breathlessness and hoarseness for a number of months. He knew no one with IPF at the time and was feeling very isolated.
He considers himself to be very fortunate to have been put in contact with ILFA and claims this encounter was a turning point which was to have a very positive influence on the way he dealt with his health difficulties.
Matt explains how he immediately took part in the ILFA 2000 Steps a Day Challenge which helped improve his fitness and wellbeing.
He began to feel well enough to return to his love of gardening, volunteering with Swords Tidy Towns, DIY and art, although all at a slower pace!
Matt painted mainly in oils and was advised to avoid using them as they could cause further damage to his lungs. He writes of how he fortunately learnt of relatively new slow drying acrylic paints which are non-toxic, which meant that he could return to his love of painting. Consequently, Matt held his first solo exhibition in 2015 and donated some of the proceeds to ILFA.
Matt’s article also discusses how he was invited by the European Lung Foundation (ELF) to speak at the European Respiratory Society Congress in Amsterdam in 2015.
Since then, Matt has volunteered to help ILFA by taking part in an exercise video (ILFA Exercise DVD for Lung Fibrosis Patients) for patients with a respiratory illness.
He has also given talks from an IPF patient perspective at an ILFA Information Day and to a pharmaceutical company.
He proudly explains how he was involved in focus group discussions that culminated in the National Patient Charter for IPF and then became a European Patient Ambassador having completed a European Patient Ambassador Programme (EPAP) which is primarily for patients with a respiratory illness and is run by the European Lung Foundation. Linked with this, Matt joined the Patient Advisory Group (PAG) which review and promote the programme.
Finally, he describes how he now acts as a contact person for patients who have been diagnosed with lung fibrosis to provide information on the ILFA Dublin Support Group. It means a lot to Matt to be of help, even if he feels it may appear minor compared to the work of others.
For more information, visit www.ilfa.ie, find ILFA on Facebook at: www.facebook.com/ilfaireland or follow ILFA on Twitter @Ilfa_ireland
Swords man Matt Cullen with his family.