Eileen Murray is currently working as Certified Sickle Cell Trait Counselor at Newborn Screening/Hemoglobin Trait Follow-Up Program of Center for Inherited Blood Disorders (CIBD).
Prior to joining at CIBD she was working with UCSF Benioff Children's Hospital, Oakland as sickle cell counselor & educator and project coordinator of the Talking Drums Project where she was responsible for education and counselling of the families about sickle cell trait and disease.
She completed her study at Mills College and obtained BA in communications with emphasis on film, video and sound.
She holds a long volunteering experience as sickle cell educator with organisations like Camp Crescent Moon and Northern CA sickle cell camp. She authored a book titled “Sickle Cell Trait and Sickle Cell Disease: An Activity Book”. She also co- authored an article in the Journal of the national Medical Association titled “Teaching About Genetics and Sickle Cell Disease In Fifth Grade”.
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Bhavana Patel is the president and chairman of the board of Hina Patel Foundation for Sickle Cell Disease. She is the mother of Hina who was suffering from sickle cell disease and passed away in 2010 due to liver failure.
She graduated with a B.S. in pharmacy from the University of Kansas in 1987. After gaining experience at several chain pharmacies, she opened Hina’s Mercy Southwest Pharmacy in 1996. Even though she enjoys being a pharmacist, her true love has always been caring for her daughters. Watching sickle cell anemia ravage Hina’s fragile body, their family planned around her health needs by protecting, caring, and nurturing. Living with sickle cell disease means a lifetime of painful episodes, infections, blood transfusions, and frequent trips to the hospital.
Bhavana has been inspired by Hina’s struggles and courageous spirit. As a result, she can empathize and has the drive to help individuals suffering with sickle cell disease and their families by raising awareness, providing support group, and raising funds for research to find a safe cure.
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Santonio Holmes recognized the great need to advocate for SCD when his own son, Santonio "TJ" Holmes III, began to suffer from symptoms of the disease at an early age. A blood test revealed that TJ had inherited the blood disorder, and would need to combat the disease through constant hospital visits and medical treatment. Experiencing first-hand the medical, financial and emotional difficulties that families fighting SCD face, the NFL star built the III & Long Foundation in honor of his son, to educate families and help them navigate these challenges.
Born on March 3, 1984, in Belle Glade, Florida, Santonio Holmes overcame an impoverished upbringing to become a professional football player for the Pittsburgh Steelers, New York Jets and Chicago Bears. In 2008, the gifted wide receiver was named Super Bowl XLIII MVP after making the game-winning touchdown catch. Holmes is the father of four children, Saniya, Savannah, Nicori, and Santonio Holmes III, the inspiration for the III & Long Foundation.
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Kehinde Salami, a sickle cell patient and a father to a sickle cell patient, is founder and director of The Sicklekan Sickle Cell Foundation Charity which is community/charitable organization raising awareness for sickle cell disease through various social media platforms.
He facilitate and produce presentations to universities, hospitals and other organizations teaching people about Sickle cell disease and how better to support individuals, children and families with the condition. He managed successfully get various celebrities to endorse and promote his charity over various media platforms. He and his organization is a part of an international consortium which includes policy leaders, pharmaceutical firms and other organizations in regards to improving better treatment and care for sickle cell patients.
He also has been featured on television, newspapers, blogs and the BBC which helped him in reaching to the wider community of patients living with the condition. Kehinde provides a platform for patients with sickle cell disease to have a voice and speak about their personal experiences.
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Beng Richard Fuh is currently working as associate professor of pediatric hematology /oncology at department of paediatrics, East Carolina University. He is also the division Chief of pediatric hematology/oncology and director of research.
His primary speciality covers pediatric hematology/ oncology and bone marrow transplant with research interest focussed on sickle cell disease, thrombophilia, and solid tumors in children.
He holds board certifications in both pediatrics as well as pediatric hematology/oncology. He completed his residency from Children's National Medical Center, Washington, DC and Howard University Hospital, Washington, DC followed by fellowship from Columbus Children's Hospital and the Ohio State University.
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The Indiana Hemophilia & Thrombosis Center is the only federally recognized comprehensive hemophilia treatment center (HTC) in Indiana, and one of the largest centers in the nation. IHTC is the first HTC to receive national quality certification by the Accreditation Association for Ambulatory Health Care (AAAHC).
The IHTC, a 501(c)3 nonprofit entity, is dedicated to providing the best, most comprehensive care to people in Indiana with bleeding or clotting disorders and to their families. The IHTC is both nationally and internationally distinguished as a Center of Excellence for its leadership in bleeding disorder patient care, education and research.
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Background: Sickle cell disease (SCD) is a heterogenous condition causing substantial morbidity and early mortality, but life expectancy has improved in recent decades. Research shows that affected adolescents/young adults (AYAs) and their parents understand the effect of SCD on their future differently than physicians. How prognosis is addressed in clinical practice is unknown and important for shared, informed decision-making.
Objectives: To compare perceptions of SCD-related prognosis among AYAs, parents and pediatric hematologists.
Design/Method: We conducted surveys to English-speaking AYAs (ages 11 – 21) with SCD, their parents, and pediatric hematologists about prognosis in SCD. AYAs and parents were recruited from four centers during health-maintenance visits. Questions were grouped by theme and answers compared using Chi-square or Fisher’s exact tests.
Results: 101 adolescents, 98 parents and 115 pediatric hematologists completed surveys. Adolescents were 51.5% female, 85% Black, with a mean age of 16.44 +/- 2.6 years; 72.3% had HbSS, 63.5% were taking hydroxyurea. Parents were 77.4% female, 84.4% Black; 73.5% of their children had HbSS, 56.1% were taking hydroxyurea. Parents (67.3%) and AYAs (53.4%) rated discussions of life expectancy as “very important”, however 68% of parents and 57.3% of AYAs reported that their doctors did “not often” discuss how long patients with SCD live. Consistent with this, 37% of doctors reported discussing life expectancy with AYAs; 39% did with parents. Most doctors (77%) reported patients initiating prognostic discussions. AYAs (63%) and parents (50%) want doctors to discuss life expectancy. Most hematologists thought AYAs (98.2%) and parents (89.8%) were somewhat to very afraid of SCD. Parents reported more fear of SCD than adolescents (29.2% vs. 13% “very afraid”, 39.8% vs. 36% “a little afraid”, 30.2 vs. 51% “not afraid,” p<.01). AYAs (50%) and parents (71%) did not believe that SCD would change life expectancy.
Conclusion: Prognostic discussions that include life expectancy are infrequent among AYAs with SCD; AYAs and their parents report wanting this information. Pediatric hematologists perceive that patients and families have more fear of SCD than patients and parents report. This study provides novel information to design interventions to guide conversations regarding disease prognosis and possibly treatment decisions with patients with SCD and their families.
Abstract source
Background: Males with sickle cell disease (SCD) have a 29-42% lifetime probability of developing priapism. Management of priapism is controversial and not evidence-based. Red cell exchange transfusion has been used to manage sickle related complications but several case reports have described acute neurological events following exchange transfusion for priapism, which limits enthusiasm for routine adoption of this therapy. Presently there are little data characterizing exchange transfusions utility and safety in treating priapism.
Objectives: To determine and compare the incidence of adverse events seen in patients with SCD receiving red cell exchange transfusion for refractory priapism and secondary stroke prophylaxis.
Design/Method: The University of North Carolina’s blood bank database was used to identify patients with SCD who were enrolled on chronic exchange transfusion program for refractory priapism from years 2004- 2015. An age-matched cohort of seven patients enrolled in exchange protocol for secondary stroke prophylaxis was identified.The first exchange procedure for both groups will be used for comparison. Adverse events such as vital sign instability and acute neurologic events were collected. Data collected will be analyzed to determine if there is a difference in adverse events in the priapism group compared to those receiving exchange transfusions for secondary stroke prophylaxis.
Results: We identified seven patients with SCD who were enrolled on a red cell exchange protocol for refractory priapism. We evaluated 6 episodes of exchange transfusions per patient. The mean age was 24; six patients have HbSS and one patient has HbSC. Two episodes of hypotension were recorded in one patient on two separate procedures.This resolved after decreasing the inlet pump flow rate to the patient. No adverse neurologic events were recorded. One patient experienced lip tingling that resolved with calcium carbonate tablets.The comparison data for the patients being transfused for secondary stroke prevention is being collected.
Conclusion: Although exchange transfusion is infrequently used for treating refractory priapism in patients with SCD, the incidence of adverse events appears to be minimal. Analysis is ongoing to compare the safety of red cell exchange transfusion for priapism to stroke.Future controlled trials using blood exchange transfusion for refractory priapism are needed.
Abstract source
