Fighting for EQUALITY . . .

LifeLines for HealthSM Disclaimers

The views and opinions of our writers are not a reflection of CHES Foundation, Inc. or its sponsors.

This newsletter is designed to provide a forum for community members to express their views from an open and honest platform. It is meant to provide a sharing of knowledge and experience to help one another. Nothing in this newsletter is meant to replace the advice of your HTC, medical professional team or insurance provider. You are always urged to seek the opinion of a healthcare professional for treatment and your specific insurance provider for information.

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In every publication of LifeLines for HealthSM, we will provide links to other websites that are not owned or controlled by CHES or its sponsors. We cannot be responsible for privacy practices of other website owners, nor can we be responsible for the accuracy of the information provided.

Letter From the Editors

Welcome!

How blessed we were to see sooo many of you last summer and fall as live programming became a reality again! Just seeing your faces has made the struggle of the last couple of years all worthwhile. Be sure to read our participants stories in Community Chatter and what it meant to be together.

This edition is about….CHANGE!! If life with a chronic medical condition has taught me one thing, it is that very little stays the SAME. One of my favorite sayings by Neal Donald Walsch is that “Life Begins at the End of Your Comfort Zone.” Every one of us have been pushed to that edge, and the miraculous thing is how we adapt, accept, and grow. Now some of you may approach change kicking and screaming! Read about how to make peace with it with Dr. Gary McClain in Family Matters.

The landscape of our community and society has changed dramatically in the last 4-5 years for a vast number of reasons - COVID being one of them. To continue to provide the programs and services our participants have come to rely on, Comprehensive Health Education Services (CHES) and nSpiration have combined to form a 501 c 3 non-profit named CHES Foundation, Inc. CHANGE in motion! Want to help? See how your donations make a difference.

Since 2016, we have been blessed to carry the torch Barb Forss, founder of LadyBugs picked up in 1998 after being diagnosed with FVII deficiency at the age of 47 to advocate for women with bleeding disorders. The paradigm is shifting, slowly, but building momentum. In our feature with Dr. Joanna Davis, she talks about this change, what diagnostic tests women need, what they mean, and how to advocate for diagnosis, care, and treatment.

Want to make changes in your nutritional life? Read onwe have a lot to cover!

Our website, https://CHES.foundation is undergoing a transformation; be sure to stop by! Like us on Facebook and follow us on Instagram to stay apprised of how to keep up to date and connected to programs. Don’t forget to share with friends. If you have an idea, comment, or suggestion, don’t hesitate to let us know at info@CHES. foundation. We love to hear from you!

Hoping that the winter brought you closer to the people who truly matter in your life and brought rest and rejuvenation. Be safe, be well, and we look forward to seeing you again in 2023!

- Janet Brewer & Eric Lowe

jbrewer@CHES.foundation

elowe@CHES.foundation

“We must never forget that we may also find meaning in life when confronted with a hopeless situation, when facing a fate that cannot be changed…When we are no longer able to change a situation-we are challenged to change ourselves.“

-Viktor Frankl

Feature

11 I Fighting for Equality in Healthcare

Since the inception of healthcare, the needs of women have been minimized or ignored. Many of which are right here - in our own backyard. Women who display irregular bleeding are often denied treatment and a proper diagnosis simply because we are traditionally taught that only males can have many bleeding disorders like hemophilia. This issue's feature offers tools, tips, and resources to approach even the most skeptical healthcare providers.

Contents

WHAT’S NEW

3 I Introducing CHES Foundation

For the past 14 years, CHES has had the pleasure of serving the bleeding disorders community. "A for-profit organization with a non-profit heart" - we used to say. As of Jan. 1, CHES officially transitioned to a 501(c)3. Find out what that means for us all.

Community Chatter

5 I Pulse Check: Reemergence of Men's Inhibitor Support

The perfect storm, or rather, "imperfect" storm of market shifts, tighter budgets, a sluggish economy, and a pandemic quickly diminished one of the most heavily supported sections of this communitythose with inhibitors. Two of our inhibitor programs were resurrected this past summer. Participant, Lavang Vu explains the impact this has on his life, as well as others.

7 I Elizabeth's Inhibitor Family

An inhibitor diagnosis is a scary experience; especially for those who are new to bleeding disorders. These are the times of 'fight or flight'. The Robles family chose fight when they attended 'After the Shock', an inhibitor family camp where everyone, both patients and professionals, understands the struggles. Mother, Elizabeth tells their story.

FAMILY MATTERS 21 I Facing Change: Kicking & Screaming... Accepting... Coping... Growing

These past few years have inflicted a lot of change into our lives. Like a ripple effect, one thing happens and ten things are forever altered in our personal universe that we've found so much comfort in. Our favorite therapist, Dr. Gary McClain has a simple step process to help embrace change and make the best of it. Who knows? Perhaps you'll come out better than before after applying his methods and by gaining the right perspective!

Bloodlines

27 I MASAC Makes Recommendation for Genotyping

There's still so much we don't understand in bleeding disorders. But we continue to advance. The availability of genotyping continues to increase, yielding fascinating, new information. Learn the benefits as well as NHF's Medical and Scientific Advisory Council's recommendations for improved quality of life.

Mind Body Connection

37 I Habits to Improve Your Health After the Winter

The majority of us fall into the abyss of holiday (and overall winter hibernation) eating habits that are just plain cruel to our bodies. Registered dietitian, Megan Allen has a well-balanced plan served with simplicity, fused with obtainable goals, and accompanied with a side of enjoyable compromises that can help us all feel better inside and out.