As a mother, I know that I have a responsibility to vote on Election Day for many reasons, and when I walk in that booth to cast my ballot, I will be thinking of not only my own children but other kids and their parents all across the country who deserve access to quality, affordable health care. As a parent, my main responsibility is the health and safety of my daughter, Chase, and my son, Chance. I’m sure parents everywhere can relate to that. As nurturers and providers, we embrace our role to protect our loved ones but we also need to make sure that our laws and elected officials reflect our priorities and our values. And as I personally continue to battle sickle cell disease, it is very clear that my own health is very much tied to me being able to take care of my children. That’s really what the health care fight and this election is all about—the well-being of our families. Related story

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The mission of the L.D. Barksdale Sickle Cell Foundation is to optimize the quality of health care and the quality of life for individuals and families impacted by the presence of Sickle Cell Anemia Disease.   Services Provided: • Screening, Testing and Counseling • Case Management Assessment • Psychosocial Assessment and Referrals • Health fairs, Educational and Organizational Programs • Referrals for Financial Assistance   The Foundation has greatly impacted and motivated many genders and race to take action to make sure that all family members are tested. Please continue to make this awareness to everyone. Official website

Over the last 30 years, children with sickle cell disease (SCD) have seen drastic improvements in their survival and quality of life through a standardized approach to treatment, disease modification, and preventive care. Adults with SCD, on the other hand, have often found it difficult to access these types of services and end up experiencing a higher amount of disease-related complications. In order to meet the needs of all individuals with SCD in our community, regardless of age, we have created the Comprehensive Sickle Cell Disease Program of Greenville Health System.   Services provided: • Patient-centered, compassionate care for children and adults with SCD • Dedicated care team (social work, psychology, nursing, medical providers) providing outpatient and inpatient services • Outpatient infusion program for delivery of pain medications, fluids, antibiotics, and blood transfusions • Management of disease modifying medications, such as Hydroxyurea and Endari • In-office stroke risk screening with Transcranial Doppler (TCD) Ultrasound • Chronic RBC transfusion program with apheresis capabilities on-site • Standardized transition program designed to educate support and adolescents as they move into the adult model of care • Social work and case management services • School Intervention Program (SIP) • Access to local and national research protocols Official website

September was Sickle Cell Awareness Month in the United States. Every year at this time, I like to take a moment to reflect on all the incredible work being done by and for the sickle cell disease (SCD) community, while recognizing that we have a lot left to do.Great strides are being made in raising overall awareness about SCD, but I believe there remains an urgent need to increase understanding that SCD is not just a physical disease. SCD can affect all aspects of a patient’s life, including emotional well-being.What I’ve heard time and time again from people living with SCD is that they often feel isolated in their journey. Kyle, a patient living with SCD, recently summed it up nicely when he said, “Sometimes it is hard to just get out of bed. What it means to live in pain is not something that many can truly understand.”  Abstract source

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Many of us might not like cold winter weather. But for families of kids with sickle cell disease (SCD), winter is when they need to be really careful. “While it’s entirely possible to control symptoms of sickle cell disease, times of stress—which can include extremes of weather, sickness and dehydration—can all cause symptoms to get worse,” said Dr. Nnenna Badamosi, a pediatric hematologist/oncologist and director of the sickle cell disease transition program at the Children’s Hospital of Georgia.   Abstract source

If you have sickle cell disease, your body makes sickle-shaped, or crescent-shaped, red blood cells. For patients who have sickle cell disease, an oral medicine called hydroxyurea may be able to help. Patients who take hydroxyurea must have regular medical care. A doctor who knows about hydroxyurea can tell you about the risks and benefits of taking this medicine. Taken daily by mouth, hydroxyurea can help: ·         Reduce the likelihood of having a pain event ·         Reduce the need for blood transfusions ·         Improve anemia and quality of life ·         Reduce emergency visits and hospitalizations ·         Prevent symptoms like acute chest syndrome, a condition similar to pneumonia Some patients may also benefit from taking a new medicine called L-glutamine oral powder. Talk to your doctor to determine if this medicine is right for you.   Abstract source

Learn about the history of sickle cell disease in the United States, from its discovery in 1910 to the National heart, lung and blood institute (NHLBI) legacy of research that has advanced the understanding of sickle cell disease, improved clinical progress, and paved the way for a cure for all patients.  Abstract source

If you have sickle cell disease, you can live a full life and enjoy the things that most other people do. These tips will help you stay as healthy as possible.   Checklist Good Health Care ·         Work closely with your doctor to develop your own unique care plan. ·         Build relationships with a hematologist and a team of other specialists so they are available for you when needed.   Healthy Lifestyle ·         Stay active ·         Drink 8–10 glasses of water daily. ·         Follow a heart-healthy eating plan that includes limiting alcohol. ·         Aim for 7–8 hours of sleep a night.   Prevent Infections ·         Children under 5 years old should take penicillin regularly. ·         Adults and children should get scheduled vaccines, including flu shots. ·         Wash hands often.   Abstract source