Shearstown man liv­ing with CF

Mother finds hope in great strides be­ing made in Cys­tic Fi­bro­sis re­search

The Compass - - FRONT PAGE - BY DANETTE DOO­LEY

For 24-year-old Brad Tut­tle of Shearstown, liv­ing with Cys­tic Fi­bro­sis (CF) is sim­ply just liv­ing.

“When you’re di­ag­nosed at age three months and you live with it from the beginning, it’s the norm for you be­cause you don’t know any dif­fer­ence,” Brad says dur­ing an in­ter­view at his St. John’s apart­ment.

The Tut­tle fam­ily is from Shearstown.

Brad’s mother, Glenys Tut­tle, says when you raise a sick child it’s dif­fi­cult to let them go out on their own.

For the past two years, Brad has been liv­ing in St. John’s, tak­ing a com­puter sup­port spe­cial­ist course at the Col­lege of the North At­lantic.

He’s re­cently started a work term at The Rooms in St. John’s.

“That will be done in Au­gust and then I’ll ac­tu­ally get my diploma. And hope­fully, I’ll be kept on or I’ll find an­other job and con­tinue on liv­ing and work­ing in St. John’s.”

Many of Brad’s friends moved to the cap­i­tal city af­ter com­plet­ing high school. At his mother’s in­sis­tence, Brad con­tin­ued to live at home and com­pleted a twoyear com­puter course at Keyin Col­lege in Carbonear.

Worry

“Mom just didn’t want him to go to St. John’s. I was so wor­ried about how he’d get on in here by him­self. He takes about 40-45 pills a day,” Glenys says.

While wor­ried whether her son could look af­ter him­self dur­ing the early months of his move to St. John’s, Glenys and her hus­band Ge­orge soon re­al­ized he had things un­der con­trol.

“He’s been do­ing mar­velous on his own. And we re­al­ize now that he could have done it out of high school. But I just wasn’t ready to let him go.”

Cys­tic Fi­bro­sis af­fects the lungs and the di­ges­tive sys­tem, where it blocks the ab­sorp­tion of nu­tri­ents from food. In the lungs, the ef­fects of the dis­ease are most dev­as­tat­ing, and with time res­pi­ra­tory prob­lems be­come in­creas­ingly se­vere.

Per­sons with CF must fol­low a de­mand­ing daily rou­tine of phys­i­cal ther­apy and large amounts of drugs to keep the lungs free of con­ges­tion and in­fec­tion and to help them ab­sorb ad­e­quate nutri­tion from their food.

Brad says he has no trou­ble do­ing his ther­apy or tak­ing his pills. The only draw­back, he says, is that be­cause the ther­apy is a must in the morn­ing and at night, he has to get up much ear­lier than oth­ers to get ready for school or work.

Glenys says when her son was di­ag­nosed with CF as an in­fant; she never thought he’d live to ven­ture out on his own.

“I didn’t know any­thing about it at the time. They say it’s hered­i­tary but we never knew it was in our fam­ily. We have three other chil­dren and they’re fine.”

Her first ques­tion to the doc­tor was whether the dis­ease could be cured, Glenys says.

“When they said, ‘no,’ I was dev­as­tated. It was a very scary and hard time. All I could think about was that some­thing was go­ing to hap­pen to him and he was go­ing to die. There was one woman there who told me that she had three chil­dren with CF, and that the three of them had passed away.”

More adults

May was Cys­tic Fi­bro­sis Month.

Betty Shep­pard is pres­i­dent of the East­ern New­found­land and Labrador chap­ter of the Cana­dian Cys­tic Fi­bro­sis Foun­da­tion (CCFF).

There are cur­rently 75 peo­ple in this prov­ince liv­ing with CF, Shep­pard says.

“Over half of them (42 in­di­vid­u­als) are over the age of 18, so we have more now in our adult clinic than our pe­di­atric clinic whereas, 10 years ago, only about 25 to 30 per cent were over the age of 18.”

Peo­ple are not only liv­ing longer, their qual­ity of life has also im­proved greatly, Shep­pard says.

“There’s so much re­search that has gone on to bring new drugs that loosen up mu­cus and make it eas­ier to come up.”

New an­tibi­otics to help fight in­fec­tion have also been de­vel­oped over the last five years, she says.

Bet­ter ed­u­ca­tion also means peo­ple with CF are tak­ing bet­ter care of them­selves, Shep­pard says.

“The other thing is a (lung) trans­plant. We have six kids with trans­plants right now in this prov­ince,” Shep­pard says.

While Brad’s lungs re­main in good con­di­tion, if the CF wors­ens over the years, there’s al­ways the pos­si­bil­ity of a lung trans­plant, he says.

His mother also re­mains op­ti­mistic about his fu­ture.

“Great strides are be­ing made and that gives you hope. If you don’t have hope, you don’t have any­thing,” Glenys says.

For in­for­ma­tion on CCFF an­nual Great Strides Walks, which take place in var­i­ous parts of the prov­ince May 31, visit www.cys­tic­fi­bro­sis.ca)

danette@nl.rogers.com

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