Lo­cal’s bat­tle with lu­pus

The Advocate (Perth) - - FRONT PAGE - Sarah Brookes

LU­PUS has been Mary Erceg’s daily com­pan­ion for more than four decades.

Ms Erceg, who grew up in Caversham, said she was for­tu­nate to be di­ag­nosed with the au­toim­mune dis­ease in 1973 at the age of 16 be­cause with­out early di­ag­no­sis and treat­ment, lu­pus could be fa­tal.

“Ini­tially I had mys­te­ri­ous bruises and swollen and painful joints on ev­ery body part imag­in­able, which was ini­tially put down to sport in­juries and later ju­ve­nile arthri­tis,” she said.

“But I kept get­ting sicker and sicker with my ex­pand­ing list of symp­toms from chronic tired­ness to nau­sea, sen­si­tiv­ity to the cold and myr­iad in­fec­tions prov­ing to be a real mys­tery for doc­tors.

“In the ’70s most doc­tors had barely heard of sys­temic lu­pus ery­the­mato­sus, let alone knew how to di­ag­nose it.”

Ms Erceg said she was for­tu­nate her GP had vis­ited the UK where he had seen lu­pus pa­tients and was fa­mil­iar with the tell-tale but­ter­fly rash.

“Fi­nally get­ting a cor­rect di­ag­no­sis was a re­lief, but it was also very fright­en­ing. My par­ents were told at best my life ex­pectancy would be five to 10 years,” she said.

“I was gut­ted. I was just a teenager and meant to be en­joy­ing life, not deal­ing with a chronic, life-threat­en­ing dis­ease.”

Ms Erceg said her happy, re­silient na­ture proved vi­tal in cop­ing.

“I re­mem­ber think­ing no doc­tors are go­ing to give me a death sen­tence. I will prove them wrong,” she said.

“In the first cou­ple of decades my symp­toms were un­pre­dictable and ex­pand­ing in com­plex­ity and du­ra­tion.

“Sim­ple tasks like get­ting out of bed, brush­ing your teeth and some­times even breath­ing were dif­fi­cult.

“There were many days when I won­dered how I was go­ing to get through the minute, let alone still be here decades later.”

“In 1984 I stum­bled upon Louise Hay and her book You can heal your life, which got me think­ing about lu­pus not just as a phys­i­cal dis­ease but as a to­tal in­te­grated pack­age of mind, body, spirit and soul,” she said. “I threw my­self into re­search­ing ev­ery­thing and any­thing I could get my hands on.”

At the age of 27, her jour­ney to well­ness be­gan in earnest.

“Life was fi­nally start­ing to look up,” she said.

“But just when things were con­sis­tently go­ing well I had a ma­jor set­back af­ter I picked up an in­fec­tion fol­low­ing an overseas trip.

“Trag­i­cally for me, some fun­da­men­tal treat­ment er­rors were made at the hos­pi­tal by doc­tors not fa­mil­iar with the dis­ease and I found my­self in ICU in a coma for more than a week fight­ing for my life. I spent more than four months in hos­pi­tal learn­ing to talk, learn­ing to feed my­self and learn­ing to walk again.”

Ms Erceg is now on the Board of Lu­pus WA and is com­mit­ted to shar­ing lessons learned from her lived ex­pe­ri­ence with the dis­ease which af­fects around 40,000 Aus­tralians.

“Grate­fully, to­day I am happy and healthy and live a full and ac­tive life,” she said.

“Now my daily chal­lenge is to con­tinue to live well with lu­pus and along the way to sup­port oth­ers to make their own lu­pus jour­neys a lit­tle eas­ier.”

D482376

Mary Erceg is on the board of Lu­pus WA.

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