In college I raised $52 for cancer. I walked miles in my achy body because I supported cancer research, but also because it was the most relatable cause I could find. Like sickle cell, cancer patients called the hospital their second home.Everyone cares about something outside of themselves. It’s the definition of humanity. It’s the reason there are advocates who walk miles for a cause.However, I have found an undeniable shortage of people advocating for sickle cell. Our biggest supporters are the ones fighting with and for sickle cell disease, a blood disorder that produces misshapen red blood cells that deprives oxygen to very organs needed to survive. Alongside us are few; only those close enough to have a personal stake in our health. Related story

 Jeffrey Zuttah, 33, is a patient advocate, business development professional for the technology firm Quartet. In 2003, Jeffrey Zuttah was captain of state championship football team at his college and an academic whiz kid who dreamed of playing college football.An All-American, he won a scholarship to the University of Michigan, but because of his disease, he wasn’t allowed to play. Zuttah transferred to Stanford University with his goal still intact. But less than a year into his football career, an SCD crisis ended his dream.Zuttah, then, earned a degree in public policy and then an M.B.A. with honors from Harvard. Presently, he works with a firm that tries to improve outcomes for patients with concurrent chronic issues, and he volunteers as a patient advocate in local and national SCD organizations.  Related story

  Mikeia Green was born with Sickle Cell Disease. She shares her experience of how she managed sickle cell disease (SCD) in college. Ms. Green’s mother always took care of her but Mikeia left her home in Arizona to attend college in California. This brought a big change in her life when she started dealing with day to day struggles. While in college, Mikeia never let her SCD condition limit what she could accomplish. She was involved in a variety of service and cultural organizations, tutored students, held a work-study job, and made time for the gym to stay healthy. Mikeia reached out to the Sickle Cell Disease Foundation in California (SCDFC) for support and resources to help her find a doctor. She also connected with a social worker from the Children’s Hospital of Los Angeles to help her transition from her previous pediatric care to an adult care specialist.   Related story

In the U.S., an estimated 100,000 Americans live with sickle cell disease, or SCD. Yet, despite its impact, the disease and its patients remain largely out of the public eye.This hour, C-HIT reporter Peggy McCarthy helps us understand why. We discuss the realities of SCD awareness and hear from a New Haven resident living with the disease. Related story

Background: Vaso-occlusive crisis (VOC) is a frequent event for children with sickle cell disease and creates a significant burden on emergency departments (ED). Previous reports showed decreased admission rates when individualized pain plans (IPP) are used in conjunction with day hospitals or sickle cell nurse practitioners embedded in the ED.   Objectives: To reduce the admission rate for children with sickle cell disease presenting to our pediatric ED with VOC by >20% within six months of initiating IPPs.   Design/Method: A quality improvement team was assembled including members of the hematology division, ED, and pharmacy. A Plan-Do-Study-Act (PDSA) format was employed. The IPP document was created in a unique folder within the electronic medical record. IPPs were initially created through retrospective chart review for our 80 highest resource users. Pediatric residents, ED residents, and ED attending physicians were instructed on access to and use of the IPPs. Our study measured the presence of an IPP, adherence to the IPP, and time to second opiate dose administration. Our primary outcome was admission rate. Length of stay and 72-hour return to the ED was assessed as balancing measures.   Results: IPPs were available for 73% of children with sickle cell disease who presented to our ED with VOC during the study period. The residents and attending physicians in the ED followed the IPP 84% of the time. The average time to administration of a second opiate dose was 60 minutes (CI 46.6-73.4) among patients discharged from the ED compared to 111 minutes (C.I. 76.5-145.5, p 0.008) among patients admitted to the hospital. Admission rate was 39% once IPPs were initiated compared to 57% prior to implementation (p = 0.03). Overall, admission rate decreased by 33% among patients with an IPP compared with 2014 (p = 0.038). Average LOS decreased from 4.7 days in 2014 to 3.4 days since initiating IPPs. There was no difference in 72-hour return rate to ED.   Conclusion: IPPs provide an effective strategy to reduce the admission rate for children with sickle cell disease presenting with VOC. Shorter time to second opiate dosing was also associated with a reduced risk of admission.   Abstract source

Common illnesses, like the flu, can quickly become dangerous for a person with sickle cell disease. The best defense is to take simple steps to help prevent infections. 5 tips to help prevent infection include:   Washing Hands Washing your hands is one of the best ways to help prevent getting an infection. People with sickle cell disease, their family, and other caretakers should wash their hands with soap and clean water many times each day.   Food Safety Bacteria, called salmonella, in some foods can be especially harmful to children with sickle cell disease.   Avoid Reptiles Bacteria, called salmonella, that some reptiles have can be especially harmful to children with sickle cell disease. Make sure children stay away from turtles, snakes, and lizards.   Abstract source

For couples of African, Caribbean, Middle-Eastern, Asian or Mediterranean origin who might be at increased risk of having a baby with sickle cell or thalassaemia, two serious genetically inherited blood conditions, it can be a very worrying time. England has a National Health Service Sickle Cell and Thalassaemia Screening Programme (NHSSCTSP) offering all pregnant women antenatal screening for sickle cell and thalassaemia.  If the woman is a ‘carrier’ (or ‘trait’) the baby’s biological father is invited too.  To determine any barriers affecting the timeliness of screening and prenatal diagnosis (PND) offers and recommend ways of improving services, the Screening Programme worked jointly with the Sickle Cell Society (SCS) and UK Thalassaemia Society (UKTS) on an ‘engagement project’.  Elaine Miller of the UKTS and I conducted structured interviews with parents at risk of having a baby with sickle cell or thalassaemia, who volunteered to share their personal experiences of going through antenatal screening within the last five years.   Abstract source

Dr. Sanjay J. Shah currently works for Phoenix Children’s Hospital and specializes in Pediatric Hematology and Oncology. He treats patients with blood disorders such as Sickle Cell Disease. Online profile

Ms. Modupe Babawale is a passionate warrior living with sickle cell disease. She is the founder of the Nirvana Initiative. Nirvana Initiative is an organization set up for individuals affected by sickle cell disease. It is dedicated for spreading awareness and educating the general public about the disorder and at the same time changing people’s orientation for those affected with the disease itself. The ultimate goal is to eradicate stigmatization and ignorance associated with sickle cell disease.Ms. Babawale graduated in Bachelors of Biochemistry at Bowen University, Iwo Osun State and completed her Master’s in Biotechnology (specializing in molecular hematology) at Coventry University, UK.  Online profile

Dr. Dora Clayton-Jones is an Assistant Professor at Marquette University. She is also the Founder of Children First Angelic Foundation, Inc. with a mission to support children and families of diverse backgrounds and encourage holistic development. Her research interest is in promoting spirituality and health in adolescents, self-management of chronic conditions, health disparities and equity, qualitative research, and community-based participatory research. Dr. Clayton-Jones is also an author, minister, certified pediatric nurse practitioner, and educator. She has presented in the community on several topics related to child and adolescent health, child development, ministering to children in the hospital, and helping children grieve. She examines the health care transition experiences of adolescents and emerging adults living with sickle cell disease and ways to promote their self-efficacy and transition readiness. She is a board certified pediatric nurse practitioner and works to promote health equity.  Representative Publications: Spirituality and Religiosity in Adolescents Living With Sickle Cell Disease The Role of Spirituality and Religiosity in Persons Living With Sickle Cell Disease: A Review of the Literature Online profile