Mak­ing a dif­fer­ence to type 1 di­a­betes fam­i­lies in WA

Australian Health Today - - Aht Feature -

Be­ing di­ag­nosed with di­a­betes at any age would be dev­as­tat­ing and most adults would strug­gle to come to terms with the life­style change. Con­sider a child be­ing di­ag­nosed with type 1 di­a­betes, a chronic and some­times de­bil­i­tat­ing dis­ease that over­whelms and shocks a whole fam­ily unit. The en­tire fam­ily net­work is af­fected and the phys­i­cal and psy­cho­log­i­cal strain se­verely dis­rupts fam­ily dy­nam­ics un­til med­i­cal man­age­ment is fully un­der­stood and man­aged. Chil­dren, who can be di­ag­nosed as new­borns right up to young adults, all face a life de­pen­dent on self-ad­min­is­tered in­sulin. For par­ents with young chil­dren, this means get­ting over the ini­tial shock and be­wil­der­ment caused by the life chang­ing, life- threat­en­ing dis­ease that will need con­stant mon­i­tor­ing and an im­me­di­ate change to their pre­type 1 lives.

So preva­lent in to­day’s so­ci­ety, type 1 di­a­betes is the body’s in­abil­ity to pro­duce the hor­mone in­sulin, which is nec­es­sary to turn car­bo­hy­drates from food into en­ergy. Di­ag­no­sis re­quires, not just daily in­sulin in­jec­tions and con­stant blood sugar mon­i­tor­ing, but a com­plete life­style shift, and one that has so­cio-psy­cho­log­i­cal ef­fects and can leave a fam­ily in tat­ters. Par­ents, sib­lings and ex­tended fam­ily mem­bers need to play an ac­tive role in the com­plex daily man­age­ment of type 1. It af­fects over 120,000 Aus­tralians and ap­prox­i­mately 2000 cases are di­ag­nosed per year. There is no known cause, and sci­en­tists have been baf­fled for many years about the on­set of type 1 di­a­betes, but ex­ten­sive cure re­search gives hope to the di­a­betes com­mu­nity world­wide.

Step in The Telethon Type 1 Di­a­betes Fam­ily Cen­tre in Perth’s north­ern sub­urb, Stir­ling. The Fam­ily Cen­tre is proudly the first of its kind in Aus­tralia of­fer­ing sup­port to fam­i­lies with chil­dren di­ag­nosed with type 1 di­a­betes. The fo­cus of the cen­tre is to en­gage the type 1 com­mu­nity and pro­vide holis­tic care ser­vices that in­clude so­cial and psy­cho­log­i­cal sup­port in a car­ing and safe en­vi­ron­ment. Ed­u­cat­ing those touched by type 1 and

pro­vid­ing a com­mu­nity-based care en­vi­ron­ment is first and fore­most the aim of the cen­tre.

Re­becca John­son, Chief Ex­ec­u­tive Of­fi­cer of the Type 1 Fam­ily Cen­tre, is pas­sion­ate about bring­ing fam­i­lies to­gether to form a net­work with the goal of suc­cess­ful man­age­ment of type 1 di­a­betes. Her team pro­vide fam­ily sup­port camps, so­cial and ed­u­ca­tional events, on­line sup­port, peer net­work­ing op­por­tu­ni­ties, cook­ing and di­etary work­shops and much more; all to pro­vide the emo­tional and phys­i­cal sup­port needed by the type 1 com­mu­nity.

Hav­ing been di­ag­nosed with type 1 her­self in her teens, she is all too fa­mil­iar with the roller­coaster ride that is type 1 di­a­betes, and is fully aware of the com­plex na­ture of the cor­rect man­age­ment of type 1.

She ad­mits she felt con­fused, dazed, and “lost” when it came to man­ag­ing her blood sugar lev­els in the early days. “You know you have to do it right to sur­vive. It is a life threat­en­ing ill­ness that is with you for the rest of your life.”

The seem­ingly com­plex man­age­ment of type 1 is over­whelm­ing when terms such as “bolus”, “basal”, “hy­per­glycemia”, “hy­po­glycemia”, “ke­toaci­do­sis” and “CGM” are thrown around in con­ver­sa­tions be­tween fam­i­lies. Ed­u­cat­ing the chil­dren and fam­i­lies of type 1 is para­mount and thanks to the gen­eros­ity of West Aus­tralians through Telethon, and other gen­er­ous spon­sors such as the West Aus­tralian gov­ern­ment and Lot­tery­west, the Telethon Type 1 Di­a­betes Fam­ily Cen­tre is a god­send for new fam­i­lies in­dis­crim­i­nately thrust into the type 1 world who des­per­ately need guid­ance and sup­port..

Only in op­er­a­tion since mid 2015, it now has over 250+ fam­i­lies be­ing ed­u­cated and sup­ported in a peer net­work. It is re­liant on fundrais­ing and the con­tin­u­ous gen­eros­ity of mem­bers of the com­mu­nity. “We are build­ing a sup­ported, in­formed, con­nected type 1 com­mu­nity in WA, but re­ceive no gov­ern­ment fund­ing to do our work. Fundrais­ing is a nec­es­sary pri­or­ity and we wel­come sup­port.’

Ms. John­son and her team are adamant in sup­port­ing type 1 kids and their fam­i­lies through bal­anced food choices, vi­tal ed­u­ca­tion ses­sions on blood glu­cose mon­i­tor­ing, in­formed guest speak­ers and just as im­por­tantly, so­cial events, such as camps, bowl­ing

and fun days out, to cre­ate an aware­ness in the type 1 com­mu­nity, as well as the far reach­ing com­mu­nity.

The fa­cil­ity is im­pres­sive and cre­ates a re­laxed “homely” en­vi­ron­ment, with vi­brant colours, bright and mod­ern fur­nish­ings proudly do­nated by IKEA, a fully equipped kitchen and a soon to be com­pleted BBQ out­door en­ter­tain­ing area with an in­te­grated play­ground that will be an at­trac­tion to young chil­dren and older teens.

All fam­ily mem­bers are wel­come at the cen­tre, where the fo­cus is on car­ing for chil­dren through to young peo­ple with type 1.

One par­ent from the cen­tre ex­presses their grat­i­tude, “My son’s life, and ours, will be for­ever en­riched and sup­ported be­cause some­one who cared enough about kids with type 1 had the vi­sion and per­se­ver­ance to cre­ate the Fam­ily Cen­tre and see it through.”

An avid cy­clist and sports per­son her­self, Ms. John­son can­not stress enough the im­por­tance of a healthy and ac­tive life­style for type 1 chil­dren and their fam­i­lies. Reg­u­lar sports pro­mo­tion and ed­u­ca­tion work­shops are run at the cen­tre to em­pha­sise the im­por­tance of sports in the lives of the type 1 com­mu­nity. Check out the events cal­en­dar, which is busy all year round, ul­ti­mately lend­ing a hand to im­prov­ing the lives of those liv­ing with type 1 di­a­betes.

Photo cour­tesy of Com­mu­nity News­pa­per Group West­ern Aus­tralia

Re­becca John­son Chief Ex­ec­u­tive Of­fi­cer

You know you have to do it right to sur­vive. it is a life threat­en­ing ill­ness that is with

you for the rest of your life.

type 1 facts

Type 1 is an au­toim­mune con­di­tion.

There is no cure and it can­not be

pre­vented.

Type 1 can oc­cur at any age but it of­ten

oc­curs in chil­dren and young adults.

$1.6b the cost of Type 1 on the health

sys­tem.

Aus­tralia has the 6th high­est rate of type

1 di­a­betes in the world

2000 the num­ber of di­ag­no­sis per year

of T1D.

122,330 num­ber of T1D in Aus­tralia

6 new cases di­ag­nosed ev­ery day.

will en­cour­age “The Cen­tre’s pro­grams

each stage my son’s growth through­out

our of his life whilst also sup­port­ing

par­ents walk with him. They of­fer

carb So­lu­tion Fo­rums to dis­cuss

tran­si­tion­ing count­ing, exam stress, and

of­fer into high school. They even

a grand­par­ents and neigh­bours

can have babysit­ting course so par­ents

a worry-free even­ing away.”

Dan and Michelle Hayes with baby Jack, are one of the many fam­i­lies ben­e­fit­ting from the Telethon Type 1 Di­a­betes Fam­ily Cen­tre.

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