Sickle Cell Empowerment Conference When: September 5, 2018

Sickle Cell Empowerment Conference When: September 5, 2018

Written by Beverly Lymon, Sickle Cell Care Coordinator

September was Sickle Cell Awareness Month.

Beacon Health System, out of South Bend, Indiana, celebrated the occasion by hanging over 1,000 red bows in the central part of downtown Fort Wayne.  The bows were also hung on Rudisill Blvd. and Calhoun St.  Beacon also sponsored its annual Sickle Cell Empowerment conference at Purdue University Fort Wayne.

Mayor Tom Henry presented the proclamation declaring in Fort Wayne, Indiana.  Kisha Hampton, Indiana Hemophilia & Thrombosis Center, Indianapolis gave education on Sickle Cell 101 and a brief overview of how sickle cell disease (SCD) originated.

Rep. Gregory W. Porter, Indiana House of Representatives, spoke on the topic of ringing the bell for Sickle Cell awareness and about the importance of standing together in numbers with unity and how important it is to show up in large numbers to let the community know people are suffering and dying from this chronic disease.

Mr. George Guy III, Executive Director of the Fort Wayne Housing Authority, did an awesome job as our moderator for keeping everyone on schedule much as possible.  And who would be more appropriate for opening up the conference other than Purdue University Fort Wayne’s Chancellor Ronald Elsenbaumer?

Dr. Emily Meir, MD, Indiana Hemophilia & Thrombosis Center, spoke about the transitioning program at Lutheran Hospital, moving patients from pediatric to adult care.  During this transition, educational tools are provided, and patients are given more control over their medical care.

Michelle Hoffman, Lutheran Hospital social worker, spoke about the services Dr. Dennis O’Brien office provides for sickle cell patients and a secondary health insurance for children with special health care needs. Shelley Kaiser, RN, Lutheran Hospital talked about nursing care for children hospitalized with vaso occlusive, a sickle cell crisis when the red blood cells begin to sickle and cause pain throughout the body.

Dr. Dennis O’Brien, MD, Pediatric Hematology-Oncology of the Lutheran Children’s Hospital, has been a pioneer for sickle cell children.  He has worked over a decade specializing in sickle cell disease for children.  Dr. O’Brien is loved by all the children he provided services to.  During the conference, the youth were clinging to him.

Ann Trzynka, of Law Office Van Gilder & Trzynka, spoke about the challenges to Social Security benefits. She explained the social security process when filing for disability benefits, denial, and appeal processes.  The Bridging of the Gap youth gave individual touching testimonies about their challenges with sickle cell disease.  Some of the youth stated they would like to see more community involvement and a cure for sickle cell disease.

One of the topics broached by Patricia Adams-Graves, MD, Hematology/Oncology, from Memphis, TN, focused on the transitional period from adolescence to adult.  Jodi Chambers, PA, Parkview Hospital Sports Medicine, spoke about the different challenges athletes deal with having sickle cell trait and the severity of the trait that can result in an athlete’s collapse or death while working out intensely.

Crystal Monnin, MSW, Memorial Hospital South Bend, spoke about how a child with sickle cell can experience depression and warning signs for parents to look for when they have a child with a chronic illness. Gillian Shaw, Senior Fellow Project Manager with enFocus, Inc., demonstrated the use of Healthy Points app, a social media app for children with sickle cell disease. This app is safe and HIPPA-approved for youth to communicate with other youth about their daily challenges with sickle cell disease.

We all agree that SCD is deadly. I believe that's why people with SCD are called warriors and silently fighting their illness with limited resources. We need the assistance of the community to take a stand as one so voices can be heard. We must continue to ring the bells for Sickle Cell Crisis until there is a cure. Please help us spread the word.