A painful jour­ney

Pso­ri­atic arthri­tis suf­ferer Steven Duffy will ben­e­fit from re­search part­ner­ship

The Beacon (Gander) - - News - BY SAM MCNEISH sa­muel.mcneish@thetele­gram.com

What we take for granted ev­ery day caused ex­cru­ci­at­ing and de­bil­i­tat­ing pain for Steven Duffy.

A para­medic with East­ern Health, Duffy was di­ag­nosed with pso­ri­atic arthri­tis 10 years ago and has since un­der­gone a va­ri­ety of treat­ments to help end his pain and an­guish.

“Just get­ting dressed, brush­ing my teeth and show­er­ing were all so painful,” Duffy said while ad­dress­ing a group of health pro­fes­sion­als and dig­ni­taries gath­ered for the an­nounce­ment of a part­ner­ship be­tween Janssen Inc. and the New­found­land and Labrador Health In­no­va­tion Part­ner­ship (JANL-HIP).

The part­ner­ship will fo­cus on iden­ti­fy­ing pri­or­i­ties and un­der­tak­ing re­search projects in com­plex dis­eases that are highly preva­lent in New­found­land and Labrador’s pop­u­la­tion — the re­sults of which will have a di­rect im­pact on the health of the prov­ince.

JANL-HIP will be re­spon­si­ble for de­ter­min­ing the pri­or­ity projects, re­search projects that have been iden­ti­fied by clin­i­cians work­ing in the field.

“It got so bad, I was ly­ing in bed won- de­r­ing how I was go­ing to get up,” Duffy said.

His pain started in one knee and then spread to his other knee. Be­fore he knew it, all of his joints and vir­tu­ally his en­tire body were af­fected. He suf­fered from im­mense pain, stiff­ness and swelling in all his joints.

In ad­di­tion to his phys­i­cal pain, the men­tal pain caused by the thought of how he was go­ing to pro­vide for his fam­ily was preva­lent.

To try to get a prog­no­sis, and re­lief, Duffy was pointed in the di­rec­tion of rheuma­tol­o­gist Dr. Pro­ton Rah­man.

“With Steven, I failed him on three pre­vi­ous cour­ses of treat­ment. Thank­fully, on the fourth, it is work­ing,” Rah­man said.

Rah­man, as­so­ciate dean of clin­i­cal re­search and a pro­fes­sor of medicine (rheuma­tol­ogy) in the fac­ulty of medicine, will be one of the re­searchers work­ing on the JANL- HIP project to study pso­ri­atic dis­ease.

“About six per cent of the peo­ple in New­found­land and Labrador suf­fer from (pso­ri­a­sis), more than dou­ble that of nor­mal so­ci­ety in this coun­try,” Rah­man said.

Duffy hasn’t had any flare-ups in the past 15-months and his lifestyle has im­proved de­spite deal­ing with the chronic dis­ease in that pe­riod.

He said sev­eral of his fam­ily mem­bers suf­fer from other ge­netic is­sues, and this may have led to his own is­sues.

“Me­mo­rial is an ideal re­search fa­cil­ity. What bet­ter place to study these is­sues than right here,” he said.

“I hope one day to avail of the new re­search de­vel­oped right here in New­found­land and Labrador,” he added.

En­ter Janssen Canada and a host of doc­tors, re­searchers and part­ners all hop­ing to find a means to mak­ing life bet­ter for the res­i­dents who suf­fer from pso­ri­atic dis­ease, which in­cludes pso­ri­a­sis and pso­ri­atic arthri­tis.

“There is a strong and vi­brant life sci­ences com­mu­nity here in New­found­land and Labrador,” said Chris Ha­lyk, Janssen Canada’s pres­i­dent.

“Me­mo­rial has a won­der­ful ca­pa­bil­ity of tak­ing a look at pa­tients in real-world stud­ies. This part­ner­ship will be a group ef­fort in find­ing so­lu­tions,” he added.

Clin­i­cians work­ing in the field will iden­tify re­search projects and JANL-HIP will be re­spon­si­ble for de­ter­min­ing the pri­or­ity projects.

Janssen has been an in­no­va­tor in the Cana­dian health-care in­dus­try for more than 50 years. JANL-HIP is a col­lab­o­ra­tion, which also in­cludes rep­re­sen­ta­tion from the Gov­ern­ment of New­found­land and Labrador’s Min­istry of Health and Com­mu­nity Ser­vices, the Min­istry of Tourism, Cul­ture, In­dus­try and In­no­va­tion, East­ern Health, and the New­found­land and Labrador Cen­tre for Health In­for­ma­tion.

“It has been a good week for the clin­i­cal world in New­found­land and Labrador,” Health Min­is­ter John Hag­gie said.

“We have a jewel in Me­mo­rial (to carry out these projects). As gov­ern­ment, we en­cour­age part­ner­ships that have tan­gi­ble ben­e­fits for the peo­ple of this prov­ince. The win­ners in this part­ner­ship will be the peo­ple of this prov­ince when they seek bet­ter out­comes.”

Me­mo­rial Univer­sity fac­ulty of medicine dean Dr. Mar­garet Steele said it is part of the fac­ulty’s man­date to help make health care bet­ter for ev­ery­one.

Search­ing for a new means to deal with pso­ri­atic dis­ease is a step in that di­rec­tion, she said.

“Our goal is for the right pa­tient to get the right in­ter­ven­tion at the right time,” Steele said.

“Part­ner­ships like JANL-HIP pro­vide an op­por­tu­nity to con­duct re­search that, while help­ing a pa­tient, can im­prove ef­fi­cien­cies in our health sys­tem.”

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