In­spi­ra­tional Matt gives back

Fingal Independent - - NEWS - Fer­gal MADDOCK

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.

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