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NATIONAL FOUNDATION FOR CELIAC AWARENESS

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© 2015 All Rights Reserved. 1


www.CeliacCentral.org

This Celiac Life: The Realities of Living with Celiac Disease

With Glenna Crooks, PhD and Founder of SageMyLife





Important Reminders!① Will this information be available at a later date?

• Yes, always!

• Webinar recording will be posted along with the webinar slides within 24 hours after the live webinar ends at CeliacCentral.org/webinars/archive/

② Are continuing education credits available?• Yes!

• Attendees must complete the follow-up survey in order to access this certificate.

– The follow-up survey will be sent on Tuesday, October 13thth through an email from NFCA.

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• In the case of group viewing, only the registered and logged in participant will receive credit

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Learning Objectives

• Explain and bring to life some of the realities and challenges of life with celiac disease

• Discuss how our “networks are an essential part of our health and happiness, our success and satisfaction in life”

• Review how adults and children manage their networks

• Identify action-oriented tasks that a person can use to manage challenges within their various networks





Glenna M. Crooks, PhD

GlennaCrooks.com





Margaret’s Life and Celiac Disease Management Challenges

• Being diagnosed

• Getting educated

• Telling others

• Losing trust

• Losing privacy

• Managing and monitoring

• Managing children’s health





Five Birthright Networks





Two Coming of Age Networks





Two Types of Ghosts





Understanding Networks Helps Us Better Manage Our Life

• Who is in our networks?

• Who needs to know about our condition?

• Are they willing and able to support us in living a healthy, gluten-free lifestyle?





Margaret’s Networks: 330 ‘Real’ People and 600+ ‘Social Media’ Contacts





欢迎到中国





FatigueConstipationHeadachesJoint Pain

Aging?

Stress?

Disease?Charles?

Back Home

Doctors not helping!

Is it serious?





Margaret Reaches Out for Social Support





“…go gluten-free. It might help. And, it can’t hurt, right?”





Finally Diagnosed!





18

21

57

3

85

2 2

81

61

Total = 330

Margaret’s Action Plan to Protect Her Health





Margaret’s Family Network

18 - 18





Margaret’s Health and Vitality Network21 -16





Margaret’s Education and Enrichment Network

57 - 0





Margaret’s Spiritual Network

3 - 0





Margaret’s Home and Personal Business Network

61 - 14





Margaret’s Career Network

81 - 14





Margaret’s Ghost Network

2 - 0 2 - 0





Margaret’s Social and Community Network

85 - 17





Margaret’s Action Plan for Her Health: Tell 76 People

Total = 330 - 76

18 - 1821 -16

57 - 0

3 - 0

61 - 14

81 - 142 2

85 - 17





Margaret’s Children are Diagnosed

• Faye’s research project uncovers genetics of Celiac Disease

• Faye alerts Margaret

• Pediatrician suggests delaying diagnostics until children have symptoms

• Margaret confronts her physician

• Children are tested and diagnosed

Margaret… a Mom on a mission!





Margaret’s Action Plan to Protect the Children’s Health

18

81

28

190





The Children’s Family Network

18 - 18





“Seriously, Celiac Disease”

www.SeriouslyCeliac.org

http://www.SeriouslyCeliac.org





Extended Family Reactions

“Can’t the kids ‘cheat’ for a birthday cake?”

“Isn’t gluten-free a choice?”

“See, I told you to breastfeed the kids longer!”





The Children’s Health and Vitality Networks81 - 43





The Children’s Education and Enrichment Networks

28 - 28





The Children’s Social and Community Networks

190 - 52





Margaret’s Action Plan to Protect Her Children’s Health: Tell 141 People

18 -1859 - 43

28 - 28

190 - 52

Total = 295 - 141





Margaret’s Action Plan to Protect Her Family’s Health: Tell 202 People

18 -18102 - 59

85 - 28

3 - 0

275 - 69

2 2

81 - 14

61 - 14

Total = 625 - 202





Initial Burden of Celiac Disease on Margaret

• 202 ‘need to know’ people– Assume it takes 30 minutes to arrange and complete each discussion

– That’s nearly 100 hours or just over 12 workdays

• Additional time and effort – Ongoing monitoring

– Reminders to the children

– Advocating for the children each new school year

– Navigating Faye’s college or Karl’s sleep-away camp options

– Sam’s ‘cheating’ at school to avoid social pressure





Value of Network Management for Margaret

• Easily identified those who needed to know

• Facilitated a systematic approach to informing them

• Became a network-specific approach to monitor and manage support in the long-run

• Led to solutions that were tailored to each network





In closing…

• Interested in knowing more? Contact us at:

[email protected]

• Your reactions?

• Your questions?





Save the Date!www.CeliacCentral.org/webinars

Topic: “Accelerating Celiac Disease Research: With You, We Can Go Further”

Date: Tuesday, October 27th

Time: 1 p.m. Eastern/10 a.m. Pacific

Speakers: Jacob Hughey, PhD, Francisco Leon, MD, PhD, and Joseph Murray, MD





Thank You!

• Webinar questions, comments, feedback: [email protected]

• Connect with NFCA:

this celiac life: the realities of living with celiac disease...facebook.com/nfceliacawareness...

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