Rare dis­ease topic of info ses­sion

Tri-County Vanguard - - NEWS - TRICOUNTY VAN­GUARD

Ja­son Doucette’s mother Linda died with scle­ro­derma in 2012.

Liv­ing in Tus­ket, Yar­mouth County, he says his mother never en­coun­tered any­one else with scle­ro­derma as she bat­tled the dis­ease and the re­sult­ing Pul­monary Ar­te­rial Hy­per­ten­sion.

Doucette doesn’t want oth­ers to face a sim­i­lar bat­tle alone. Fol­low­ing his mother’s death, and now liv­ing in Hal­i­fax, he be­came in­volved in the Run/Walk for Scle­ro­derma and sub­se­quently be­came Pres­i­dent of Scle­ro­derma Nova Sco­tia. He’s cur­rently pres­i­dent-elect of Scle­ro­derma Canada.

“Although our or­ga­ni­za­tions rep­re­sent a rare dis­ease, we are firmly com­mit­ted to im­prov­ing the lives of those liv­ing with scle­ro­derma,” he says.

And they are also to spread­ing in­for­ma­tion, says Doucette.

The Scle­ro­derma So­ci­ety of Nova Sco­tia will be host­ing a pub­lic in­for­ma­tion ses­sion in Yar­mouth on Satur­day, Oct. 13 at 1 p.m. at the Yar­mouth li­brary.

“This will be an ex­cel­lent op­por­tu­nity for those liv­ing with scle­ro­derma, and for ev­ery­one who is in­ter­ested, to learn more about the dis­ease and to hear per­sonal ex­pe­ri­ences from oth­ers who live with scle­ro­derma,” Doucette says. Ev­ery­one is wel­come to at­tend. Regis­tra­tion is not re­quired.

“Please join us as we raise aware­ness of this rare auto-im­mune dis­ease,” says Doucette.

Scle­ro­derma – it’s a hard word to pro­nounce and even harder to live with. This rare auto-im­mune dis­ease – which lit­er­ally means “hard skin” – can cause thick­en­ing and tight­en­ing of the skin, as well as se­ri­ous dam­age to in­ter­nal or­gans. There is no known cause and no cure.

The Scle­ro­derma So­ci­ety of Nova Sco­tia says scle­ro­derma is hard for re­searchers to un­der­stand and for health care pro­fes­sion­als to treat.

It is also so rare that in Nova Sco­tia pa­tients may never en­counter any­one else with the dis­ease. Ap­prox­i­mately 200 pa­tients live with Scle­ro­derma in this prov­ince, many in ru­ral Nova Sco­tia.

The Oct. 13 pub­lic in­for­ma­tion ses­sion will pro­vide ed­u­ca­tion, share pa­tient ex­pe­ri­ences, and seek feed­back on how to bet­ter serve the needs of pa­tients in the lo­cal area.

“This ses­sion will al­low those liv­ing with scle­ro­derma in the Yar­mouth area to en­hance their knowl­edge of the dis­ease and to hear from oth­ers who are liv­ing with scle­ro­derma” says Doucette. “The ses­sion will also pro­vide health care pro­fes­sion­als and mem­bers of the gen­eral pub­lic the op­por­tu­nity to learn more about the dis­ease, which can have se­vere neg­a­tive im­pacts to those liv­ing with scle­ro­derma.

“Our so­ci­ety has taken the op­por­tu­nity to visit many ru­ral com­mu­ni­ties, rais­ing aware­ness and en­sur­ing that those liv­ing with scle­ro­derma are aware of the sup­ports avail­able to them,” he says.

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