Strength in sup­port Myas­the­nia gravis pa­tient sheds light on lit­tle-known con­di­tion

The Times-Tribune - - LIFE & TIMES - BY CLARE COLLINS STAFF WRITER

Terri Ju­stick strug­gles with one of the most un­der­rep­re­sented dis­eases in the world, but by ed­u­cat­ing the pub­lic about myas­the­nia gravis, she dis­cov­ers hope for find­ing a cure.

The Philadel­phia na­tive moved to North­east Penn­syl­va­nia with her par­ents and three sib­lings at 18, and by the time Ju­stick reached her 20s, her mother was di­ag­nosed with oc­u­lar myas­the­nia gravis, a form of mus­cu­lar dys­tro­phy that af­fects the eyes.

“No­body even knew what the dis­ease was,” Ju­stick re­called on a

re­cent af­ter­noon at her Spring Brook Twp. home. “Since my sib­lings and I were just start­ing our fam­i­lies, no one even asked any ques­tions. All we ever heard from her was, ‘I have to take my medicine.’”

June is Myas­the­nia Gravis Aware­ness Month, draw­ing at­ten­tion to the auto-im­mune, neu­ro­mus­cu­lar dis­ease CHRISTO­PHER DOLAN / STAFF PHO­TOG­RA­PHER in which an­ti­bod­ies at­tack the nervous sys­tem in the places where it com­mu­ni­cates with the mus­cles to function. Since lit­tle was known about the dis­ease when Ju­stick’s mother was di­ag­nosed, it was dif­fi­cult for doc­tors to come to a con­sen­sus on what ex­actly was wrong.

“Jerry Lewis used to have a mus­cu­lar dys­tro­phy marathon, and every now and then, you would hear them talk about myas­the­nia gravis,” Ju­stick said. “It would catch your ear ... but when I was di­ag­nosed in 2014, that was the eye-opener.”

MG was never be­lieved to be passed down ge­net­i­cally, but af­ter Ju­stick and her mother made the choice to go through ge­netic test­ing, the re­sults ver­i­fied that both women had the same de­fect. How­ever, Ju­stick doesn’t strug­gle with just oc­u­lar MG — she ex­pe­ri­ences daily symp­toms in dif­fer­ent parts of her body, in­clud­ing dif­fi­culty breath­ing, mus­cle weakness, chew­ing trou­bles and fa­tigue.

“It’s a fluc­tu­at­ing dis­ease,” she said. “I could wake up in the morn­ing feel­ing like a mil­lion bucks, and by 10 a.m., I’ll need to sit and rest.

“Every day is dif­fer­ent. Ev­ery­one with MG is dif­fer­ent. They call it a snowflake dis­ease for a rea­son. Every­body de­vel­ops the dis­ease dif­fer­ently.”

While day-to-day strug­gles con­sume her life, Ju­stick finds peace and hope in Mg-re­lated or­ga­ni­za­tions and sup­port groups. She is a ded­i­cated mem­ber of the Myas­the­nia Gravis Foundation of Amer­ica, the Mus­cu­lar Dys­tro­phy Foundation and the Mgfa-rec­og­nized Harry Krew­sun Myas­the­nia Gravis sup­port group, whose mem­bers come from dif­fer­ent parts of NEPA. The group meets on the first Sat­ur­day of every other month at Al­lied Ser­vices in Scran­ton.

“This sup­port group in­cludes ed­u­ca­tion as well as en­cour­age­ment for those who have MG, have a fam­ily mem­ber with MG, (are) strug­gling or (are) in re­mis­sion,” she said. “The group started when Harry (Krew­sun) and his wife, Vera, saw that there was no sup­port here in NEPA, and they found them­selves trav­el­ing from Clarks Sum­mit to Mary­land for sup­port.”

Harry Krew­sun, who died as a re­sult of MG and com­pli­ca­tions sur­round­ing the con­di­tion, was an im­por­tant men­tor in Ju­stick’s life, es­pe­cially when she started at­tend­ing sup­port group ses­sions.

“Harry was a one-of-akind,” she said. “He laid out ev­ery­thing for me and taught me what to do to ad­vo­cate for my­self. Be­ing new with the dis­ease, it was great hav­ing an ‘It’s OK. I have trou­ble with that too.’”

Ju­stick hopes that if doc­tors can prop­erly di­ag­nose the dis­ease and con­duct more re­search, MG and other forms of mus­cu­lar dys­tro­phy can gain more recog­ni­tion in the med­i­cal field and even­tu­ally be cured.

“I be­lieve the most im­por­tant thing about aware­ness is that MG is un­der-di­ag­nosed,” Ju­stick said. “Most peo­ple have never heard of the dis­ease. Many doc­tors, in­clud­ing my pri­mary care physi­cian, have never seen it and have no idea about di­ag­nos­ing it.

“Aware­ness will open this door. It will help oth­ers, in­clud­ing doc­tors, un­der­stand how MG changes the life of the one who has it. If we take a step back, MG can take a life, so this aware­ness will also save lives.”

Even though she strug­gles with a life-al­ter­ing dis­ease, Ju­stick puts fam­ily be­fore ev­ery­thing else in her life. On days when she feels good, all Ju­stick wants to do is be with her loved ones.

“My chil­dren and grand­chil­dren are my life,” Ju­stick said.

Her son, daugh­ter and daugh­ter-in-law are al­ways on hand to help, but Ju­stick explained that her hus­band, Martin, takes the cake when it comes to help­ing her each day and pitch­ing in around the house.

“He cleans up the dishes at night and does the week­end cook­ing,” she said. “He helps me clean the house so it’s not all on me. He drives me to most ap­point­ments. He al­ways goes above and be­yond.”

At the end of the day, Ju­stick noted, ac­knowl­edge­ment of the dis­ease is the key to curing it.

“With MG, there are times we get lost in the pile . ... Many of us learn to ad­vo­cate or fight for our­selves,” she said. “We fight for treatments and recog­ni­tion.

“I think the most im­por­tant thing to me is aware­ness. Yes, it’s de­bil­i­tat­ing, and yes, it fluc­tu­ates. But aware­ness is the key.”

Terri Ju­stick of Spring Brook Twp. looks to raise aware­ness about myas­the­nia gravis, a dis­ease she and her mother have fought.

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