Dr. Tonya Palermo is a professor of anesthesiology, pediatrics and psychiatry at the University of Washington School Of Medicine. She serves as Associate Director for the Center for Child Health, Behavior, and Development at Seattle Children’s Hospital. Dr. Palermo's longstanding NIH-funded research program has focused on assessment and treatment of chronic pain in children and adolescents. She is specifically interested in cognitive-behavioral interventions, delivery of psychological treatment via the internet, sleep disturbances, and parent/family factors as they relate to pain treatment. Through her work as Program Director for the University of Washington Anesthesiology T32 program, Dr. Palermo is active in training clinician-scientists at the postdoctoral and junior faculty level. Dr. Palermo serves on the Executive Boards of the Society of Pediatric Psychology, the American Pain Society, and the International Society for Research on Internet Interventions. She also serves as Editor of the Journal of Pediatric Psychology, and has been elected Fellow of the American Psychological Association. Online profile

Dr. Rowley is the Founder and Executive Director of Cayenne Wellness Center and Children's Foundation (2000 - 2010). She received her M.A. in Counseling Psychology from Loyola Marymount University and her Ph.D. in Clinical Psychology from Southern Illinois University at Carbondale. She successfully completed an internship in Pediatric/Child Clinical Psychology with the Division of Child and Adolescent Psychiatry and Behavioral Sciences, University of Louisville School of Medicine as well as a post-doctoral fellowship in the Research Training Institute at Charles R. Drew University of Medicine and Science in Los Angeles. Dr. Rowley travels speaking on nutrition for area community centers (i.e., Crenshaw Medical Center located in Los Angeles) and lectures and does book signings. Her latest project, The Faces of Sickle Cell Disease, takes her around the United States photographing and collecting audio recordings of those with sickle cell disease. Online profile

Methodist Comprehensive Sickle Cell Center is a preventive outpatient clinic and dedicated emergency infusion unit specifically for sickle cell patients. They have one of the largest populations of adult sickle cell disease patients in the country. For these patients, daily life is often interrupted by pain that can last weeks – threatening their family life, career, education and social life. It is for these patients that the center is dedicated to delivering innovative, comprehensive care and developing new treatments through on-site research. They are committed to helping improve the health and quality of life for sickle cell disease patients across the Mid-South.   Services they provide- • lifetime care for adults 18 & older with sickle cell disease • an on-call physician to answer questions after hours and on weekends • comprehensive preventative care and individualized treatment plans • quick access to infusion care services for crisis management • patient education. Official website

The Cancer & Blood Diseases Department at Riley at IU Health works hand-in-hand with a large team of doctors and support staff from a variety of specialties to provide every possible treatment option available. The child's care plan may involve a treatment or therapy that is provided by specialists from the following Riley at IU Health departments: - Integrative Medicine & Palliative Care - Neurology - Neurosurgery - Pain Management - Physical Therapy & Rehabilitation - Radiology & Imaging The health team at Riley at IU Health cares about the child, and they also care about future children who will be affected by cancer and blood diseases. That is why the physician-scientists at Riley at IU Health and Indiana University Health University Hospital focus on research and clinical trials. The IU Health Melvin and Bren Simon Cancer Center is the only National Cancer Institute (NCI)-designated cancer center for clinical care in Indiana. It provides the only pediatric stem cell (bone marrow) transplant program in the state and is member of the Children’s Oncology Group Phase I & Pilot Consortium. This means it receives early access to clinical trials and newly developed cancer treatments and research. Official website

NYC Health + Hospitals are the largest public health care system in the United States. It is committed to the health and well-being of all New Yorkers and offer a wide range of high quality and affordable health care services to keep their patients healthy and to address the needs of New York City's diverse populations. NYC Health + Hospitals/Harlem are a designated Comprehensive Sickle Cell Center. The Center offers sensitive and caring pediatric services, prenatal diagnosis, transfusion, and social services along with genetic counseling. It provides high quality health care to all New Yorkers, regardless of their ability to pay. NYC Health + Hospitals provide advanced sickle cell disease care at three of their hospitals. They have full wellness teams in every borough with extended hours that fit the patient's busy schedule, dedicated to serving patient and his family from the very first visit. Official website

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https://library.med.utah.edu/WebPath/HEMEHTML/HEME015.html

Good nutrition is very important for people with sickle cell disease. It helps to promote health and prevent complications. Children with sickle cell disease need a diet that provides plenty of calories, protein, vitamins and minerals. Their bodies use more energy because they break down red blood cells faster than other children do. Higher energy needs make it common for affected children to be shorter and thinner than their peers. Kids with sickle cell disease can often catch up to their peers if they meet their energy needs. High calorie foods or extra snacks can be helpful, and that is why we’ve developed this cookbook. We want to help you meet the energy needs of a child with sickle cell disease by preparing appealing calorie-dense meals and snacks. When the body has enough fuel, it will have an easier time replacing red blood cells.   Abstract source

Background: Sickle cell disease (SCD) patients have impaired domains of health-related quality of life (HRQOL). Hydroxyurea is safe and efficacious in SCD; however, adherence is suboptimal, and patients’ perceptions are poorly understood amongst adolescents and young adults (AYA). Study objectives were to: (1) examine patients’ perceptions of SCD and hydroxyurea; and (2) explore the relationship of their perceptions to clinical characteristics, HRQOL domains and hydroxyurea adherence. Methods: Thirty-four SCD patients on hydroxyurea (≥6 months) participated in a single-institution study. Study measures included Brief-Illness Perceptions Questionnaire, ©Modified Morisky Adherence Scale 8-items, and Patient Reported Outcomes Measurement Information System (PROMIS). We assessed the relationship of patients’ perceptions to hydroxyurea adherence using Wilcoxon rank-sum test, the number of hospitalizations using Kruskal-Wallis test, and the number of ED visits, adherence level, HRQOL domain scores using Spearman’s rho correlations. We conducted a sub-analysis in HbSS patients to evaluate the relationship of patients’ perceptions to laboratory markers of hydroxyurea adherence. Results: Participants were 59% male and 91% Black, and had a median age of 13.5 (range 12–18) years. Participants with ≥4 hospitalizations over 1-year prior (using electronic medical chart review) reported more negative perceptions of SCD-related symptoms and emotional response, and perceived hydroxyurea as less beneficial; all p-values ≤0.01. Most participants (74%) reported low hydroxyurea adherence. Participants with higher hydroxyurea adherence perceived more hydroxyurea benefits (r s = 0.44, p < 0.01) and had better emotional response to SCD (r s = −0.44, p = 0.01). In a sub-analysis of HbSS patients, perceived benefits of hydroxyurea positively correlated with HbF (r s = 0.37, p = 0.05) and MCV values (r s = 0.35, p = 0.05). Participants with more negative perceptions of SCD-related consequences, concerns, and emotional response, and fewer perceived hydroxyurea benefits reported worse fatigue (r s = 0.68; r s = 0.44; r s = 0.74; r s = −0.60), pain (r s = 0.56; r s = 0.54; r s = 0.63; r s = −0.39), anxiety (r s = 0.55; r s = 0.58; r s = 0.56; r s = −0.47), and depression (r s = 0.64; r s = 0.49; r s = 0.70; r s = −0.62), respectively, all p-values <0.05. Conclusions: Dynamics influencing hydroxyurea adherence are multifactorial, and understanding patients’ perceptions is critical to overcoming adherence barriers. Patients’ favorable perceptions correlated with greater adherence and better HRQOL domain scores. Prospective evaluation of patients’ perceptions of SCD and hydroxyurea in relation adherence, HRQOL domains and clinical outcomes is warranted. Abstract source Full text

When it comes to taking care of yourself away from home, a lot depends on how severe your sickle cell symptoms can be and where you are going to college. If you're going to college where the climate may make symptoms worse (like a high-altitude location or a region with very hot or cold weather), you may need more care for pain or other symptoms. If your college is near a big city, it may be easier to find doctors familiar with treating sickle cell disease than if your college is in a small town. Regardless of where you go to school, you'll need to plan your care around both places. Here are some tips: - Keep in touch with your at-home hematology team. Doctors and nurses who have been caring for you over the years are the best people to manage your overall health. Arrange in advance to get regular check-ups during school breaks. Let your at-home care team know whenever you get medical care at school — and send or bring a copy of any lab results or health center records back to your hematologist. - Find a doctor in the college student health department (or near your school). Do this as soon as you arrive at college so you have a plan in place in case an emergency happens. Fill the doctor in on your health situation and give him or her contact information for your hematologist back home.   Abstract source