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Shared Decision Making: Making the Most of the Patient/Provider Relationship

In the bleeding community, patients and caregivers should know that they are not alone. Patients and caregivers, working in tandem with Hemophilia Treatment Center (HTC) staff/hematologist, and other medical providers have the same shared goal in mind: the best care and outcomes for the individual directly affected by a bleeding disorder. Whether you are newly diagnosed with a bleeding disorder or are looking to make a change in your treatment or service provider, hear the experiences of providers, patients, and caregivers to learn how to best communicate about your health.

Moderator

Eric Iglewski, LMSW

Eric Iglewski, LMSW has worked as a licensed social worker for about 25 years. He earned his Master of Social Work from Boston College and has specialized clinical experience in trauma, loss and group work. He is honored to have served people and families impacted by bleeding disorders at the Mary M. Gooley Hemophilia Center since 2010. He provides a wide range of services to the bleeding disorders community, including individual counseling, advocacy and supportive-educational programming to groups and families. Eric has enjoyed working on many national committees and is a former chairperson of the National Hemophilia Foundation Social Work Working Group. His HTC actively participates in the World Federation of Hemophilia Twinning program 鈥 he has worked closely with providers and consumer organizations in both Kyrgyzstan and Nepal over the last several years.

Panel

Chris Guelcher, Hemostasis RN-BC, MS, PPCNP-BC

Chris Guelcher has been a hematology/oncology clinic nurse for more than 25 years. After graduating from Georgetown University with a Bachelors of Science in Nursing she worked on an inpatient Hematology/Oncology unit at Children鈥檚 Memorial Hospital in Chicago, Illinois and later at Mott Children鈥檚 Hospital in Ann Arbor, Michigan. Since coming to Children鈥檚 National in 1992, she has worked on the inpatient unit and in the outpatient clinic as a Hematology/Oncology nurse. After completing her Masters and becoming certified as a Pediatric Nurse Practitioner, she has been the Hemophilia Nurse Coordinator at CNMC since 1997.

Chris was a member of the NHF Nursing Working Group for 3 years. She was re-elected to serve on the Region III Regional Executive Committee (REC) having served on the REC for 4 years previously. She has served as a member of the American Thrombosis and Hemostasis Network (ATHN) Board of Directors since 2008. Additionally, Chris served on the Education Subcommittee for the American Society of Pediatric Hematology and Oncology (ASPHO) and has moderated three webinars.

Ms. Guelcher was part of the Hemophilia and Thrombosis Research Society annual planning committee for the 2009 and 2010 meetings. In 2011 she helped plan and presented at the first Thrombosis and Hemostasis Summit of North America (THSNA). Chris was elected as a liaison to the THSNA Board of Directors and she was on the planning committee for the 2016 and 2018 THSNA meetings.

Chris was part of the faculty that worked with the Centers for Disease Control to develop the curriculum for the 鈥淎dvanced Partners Program鈥. She continues to work with the faculty members to keep the curriculum current and present as part of the faculty twice a year.

Robert Sidonio, MD

Dr. Sidonio is an Associate Professor of Pediatrics, Emory University SOM, Clinical Director of the Hemophilia Treatment Center and the Associate Director of Hemostasis and Thrombosis, Department of Pediatrics, Children鈥檚 Healthcare of Atlanta. The focus of his clinical research career has been on understanding the prevalence of congenital bleeding disorders such as low VWF, qualitative platelet disorders or hemophilia carriage in adolescent girls with heavy menstrual bleeding and the diagnosis and management of females with bleeding disorders. Furthermore Dr. Sidonio is also experienced with conducting and overseeing large clinical trials (Emicizumab PUP and Nuwiq ITI study, MOTIVATE study) focused on hemophilia A and inhibitors and various surveillance studies (ATHN 9, Mexico Inhibitor study). He is currently a board member of ATHN and MASAC and medical advisor to HFA.

Will Hubbert

Will Hubbert is a longtime advocate in the bleeding disorders community. He got his first taste for working in the community as a teen mentor for self-infusion clinics at the local HTC, all organized and facilitated by the amazing Christine Guelcher. Since then he’s tried to stay involved in all sorts of ways, from helping out with childcare at HFA Symposium to developing and facilitating programming that chapters all over the country can use to reach young adult community members. According to Will, when he’s not desperately seeking employment or searching for misplaced belongings, he can often be found playing ultimate frisbee or buried nose-deep in a book.

Cazandra MacDonald

Cazandra received a Bachelor of Music Education Degree from Houston Baptist University and taught band in the Texas Public School System for 13 years. In 1996, she gave birth to her first son, who was diagnosed with severe hemophilia A. Cazandra聽continued to teach and devoted her extra time to educating herself and others with bleeding disorders. In 2001 she was approached by her homecare company to develop a newsletter to educate patients about bleeding disorders and in 2003 she changed careers and has worked in the healthcare field ever since. In 2006 she gave birth to her second son, also diagnosed with severe hemophilia A.

After the birth of her second son, Cazandra learned the truth about the brother she never knew:聽Ronaldo Julian Campos was born and lived for only five days. He died from complications from a head bleed. Cazandra has worked as an advocate in the bleeding disorders community for 18 years. She is an avid blogger and writes two blogs; one聽is 2BrothersWithHemophilia. You can find Cazandra and her blogs at聽www.cazandramacdonald.com, on Twitter @2broswithhemo, and on Facebook. She is also one of HFA鈥檚 bloggers for Infusing Love: A Mom鈥檚 View. Cazandra recently gave a TED talk, “A Prisoner of Hope” which may be found on YouTube and聽tedxabq.com. She lives in Rio Rancho, New Mexico with her husband, Reverend Joe MacDonald and sons Julian and Caeleb.


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