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MiniSeminar

Fatigue & SCD Study and Stress Management – Part 2

During our miniSeminar: Fatigue and Sickle Cell Disease | Part II, we will be addressing the FiSCD Study and how we can practice Stress Management in our daily lives.

Meet Our Speaker

Phillip Okwo, MBA

SC Warrior, Advocate, and Catalyst Finance at Dow

Phillip Okwo is a former summer camp counselor at Camp Crescent Moon  external icon, a week-long sleep away camp for children with sickle cell disease in Pacific Palisades, CA.  For more than 50 years, this camp has helped kids with sickle cell learn more about their condition, coping strategies, and how to stand up for themselves when they are misunderstood because of their disease.

As a young boy growing up with  sickle beta zero thalassemia  (or HbS beta 0-thalassemia), Phillip was a camper himself.  He started going to camp in San Juan Capistrano, CA, when he was just 6 years old.  “Camp was a place I could go where I never felt alone.  I was no longer the black sheep in my family.  It was a way of just feeling normal.  There were other people there who have sickle cell like me, some who went to the hospital more than me and some who went less often.  The whole spectrum of care was represented.  I learned self-efficacy skills in understanding my diagnosis and general life and survival skills as well,” Phillip said.  When he aged out of the program, he decided to come back as a camp counselor. “I had a cabin full of 8-year olds and they wore us (me and my co-counselor) out. We didn’t get a lot of sleep, but it was a labor of love,” he said.

Meet Our Moderators

Stephanie Ibemere, Ph.D., RN

Stephanie Ibemere, PhD, RN is an assistant professor in the Duke School of Nursing. Dr. Ibemere is developing a research program focused on building healthcare capacity for sickle cell disease providers and patients to improve access and quality of care. Her research program is both internationally and domestically focused. Her work in the U.S. centers around the patient experience of outpatient sickle cell disease care and how access to high quality care could be expanded through the upskilling of and task-shifting to advanced practice providers. Dr. Ibemere is also focused on improving the clinical model of care for sickle cell disease in low resource settings both in sub-Saharan Africa through tool adaptation, implementation science, leveraging technology, and community-engaged research. Dr. Ibemere is passionate about addressing healthcare disparities in partnership with communities to co-create feasible and sustainable healthcare interventions for and with patients, providers, and the health system.

Dr. Ibemere holds Bachelor’s of Science in Natural Sciences (2010), Bachelor’s of Arts in Spanish (2010), and a Master’s of Nursing in Clinical Nurse Leadership (2015), all from Xavier University in Cincinnati, OH. Dr. Ibemere received her PhD in Nursing Research from the University of Cincinnati (2019). Dr. Ibemere is a registered nurse with experience in global health capacity building and clinical education related to sickle cell disease and other chronic diseases, clinical vaccine research, and cardiovascular critical care.

Brenda Poku, Ph.D.

Research Fellow

University of Nottingham

Dr Brenda Poku (PhD, RN) is a Research Fellow at the University of Nottingham and University of Manchester in the UK. She has a PhD in Nursing from the University of Manchester, MSc in Advanced Nursing from the University of Nottingham and a BSc in Nursing from the Kwame Nkrumah University of Science and technology-Ghana. Following several years of nursing practice in Ghana, she moved into research.

Her overarching research interest is in the experiences of children and young people with sickle cell disorders, encompassing health, social, educational, developmental and transitional experiences. Issues examined include life and transition experiences, self-management, service provision and sociological concepts such as belonging, normality, identity, stigma, gender and culture in the context of sickle cell disorders. She currently leads two research programs in the UK, one focused on fatigue in children and young people with sickle cell disorders and the other looking at the post-migration experiences of young African migrants with sickle cell disorders in the UK. Her international work focuses on self-management and health transition of children and young people with sickle cell disorders in Ghana.

Dr Poku’s research interest is shaped by her personal experience as an individual living with sickle cell anemia and having a brother with the same condition.

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For more information, please email us at  info@cayennewellness.org .