Let’s not just campaign for Sickle cell prevention; let’s be equally forceful in embracing the kids who are already here! Some call it a disease; some compare it to Aids and cancer. In that, we are constantly telling sickle cell carriers that they’re dying or going to die soon, but they are not. Stop the culture of death around sickle cell! We raise them in guilt and fear. We make their condition a secret. We don’t want anyone knowing about it, except for a very small circle of people that we “trust”, because we feel guilty, ashamed, or scared. Related content

A 24-year-old woman undergoes routine evaluation. She is pregnant at 12 weeks’ gestation. Medical history is notable for homozygous sickle cell anemia (Hb SS). She has had multiple uncomplicated painful crises treated at home with hydration, nonopioid analgesia, and incentive spirometry. She requires hospital management for these episodes approximately twice per year. She has declined the use of hydroxyurea. Her only other medication is folic acid. Related content

I’ve lived with sickle cell disease for 34 years now. Never have I imagined that a cure would be imminent, at least not within my lifetime. In fact, I remember days as an adolescent when my pediatric hematologist would tell me I’d be lucky to live long enough to experience college. It’s an everyday struggle living with an illness that penetrates all areas of my body where blood flows. Unlike most children who live with sickle cell disease (SCD), my daily struggle didn’t include constant visits to the emergency room plagued by excruciating pain (although I’d experience a great deal of pain in adulthood). Instead, the pain came from my monthly blood transfusions, which became a routine therapy after a stroke, that ultimately devastated my veins. Related content

September is National Sickle Cell Awareness Month. First officially recognized by the federal government in 1983, National Sickle Cell Awareness Month calls attention to sickle cell disease (SCD), a genetic disease that researchers estimate affects between 90,000 and 100,000 Americans. CIRM is funding a clinical trial focused on curing the disease with a stem cell-based gene therapy. People with this debilitating condition face a number of barriers in getting the help they need to keep their pain under control. In addition to the difficulty of accessing medication, they often have to overcome suspicion and discrimination. Patient Advocate Nancy Rene, of Axis Advocacy wrote the following blog about the problems families with SCD face. Related content

To learn more about SCD in Grenada, I met with the Sickle Cell Association of Grenada. Their mission is to raise awareness of SCD and improve the lives of individuals and their families affected by the disorder. The Sickle Cell Association of Grenada is a voluntary organization, which was formed in September 2006 by a group of health-care personnel and concerned individuatials. I sat down with one of the volunteers to learn about the structure of the organization and some of the challenges they face. The Association is dedicated to providing education, support and counseling to affected individuals, their caregivers and families. They are specifically focused on testing for Sickle Cell Trait. If more people know that they have the trait, they can understand the complications and learn of the possibility of having a child with SCD. Related content

We know there are several different gene variants that indicate Sickle Cell Disease, (SCD) which is characterized by the abnormal hemoglobin (the protein of the Red Blood Cell); HbSS, HbSC, HbS beta thalassemia, HbSD, HbSE, HbSO, and of course you have the Sickle Cell Trait (SCT) or HbAS. What we don't know is; why is there so much variation in the experiences of SCD related symptoms at the individual level of SCD patients? Why are some individuals constantly in pain while others rarely experience it? Why do some people die while others live? Why do we hear so many stories, from people who have SCT, who have experienced symptoms similar to that of a person who lives with SCD? Especially those horror stories of folks who pass from sudden death related to overexertion. Related content

Approximately 17% of patients with sickle cell disease have cerebrovascular symptoms; 75% of those patients have cerebral infarction, 20% have either cerebral or subarachnoid hemorrhage, and a small percentage have cerebral sinovenous thrombosis. A 22-year-old man with sickle cell disease presented with headache and difficulty speaking after smoking marijuana. He had anomia, apraxia, and alexia and was unable to perform arithmetic. Diagnostic tests were performed, and management decisions were made. Related content

Chronically Fearless blog welcomes all women who choose fearlessness in the face of chronic illness and/or adversity. Chronically Fearless aims to create a sisterhood of fearless women who share resources and experiences and offer support for one another. We hope to inspire everyone that joins the Chronically Fearless community to be STRONG, BEAUTIFUL and most of all, FEARLESS. Related content

Sickle cell disease affects about 100,000 people in the United States, most of them African Americans. Over the last four decades, the average life expectancy for patients has jumped from age 14 to the 50s and higher, thanks mainly to newborn screening programs, preventive care, and antibiotic treatments to prevent associated infections, along with assistance from hydroxyurea, a drug approved in 1998. Now, promising new treatments are on the horizon for this chronic disease, which, though not immediately fatal, can cause complications that dramatically affect patients’ day-to-day lives. Hydroxyurea, the only drug approved by the Food and Drug Administration for sickle cell disease, makes blood cells function more normally, reducing pain and helping organs work better. Unfortunately, for various reasons like fertility concerns and patients’ fears about potential side effects, less than half of the people with sickle cell disease are taking it. Related content

“One minute I’d be fine, the next minute I’d be in pain. It would just come out of nowhere,” says Tywan Willis. “I would have pain in my lower back, my shoulders, and sometimes in my legs. I can’t describe it. I just know it’s a really bad pain that I get.” Tywan has sickle cell disease (SCD), an inherited blood disease that can run in families and causes abnormal, sickle-shaped red blood cells. Pain is the most common complication of SCD, and the top reason people with SCD go to the emergency room or hospital. Tywan is a regular patient at a new sickle cell clinic within the Martin Luther King, Jr. (MLK) Outpatient Center in Los Angeles (LA). The Sickle Cell Data Collection (SCDC) program in California, which is funded through the CDC Foundation, and has been collecting information to monitor the long-term trends in diagnosis, treatment, and access to health care for people with SCD since 2010, provided data that highlighted the strong need for comprehensive care for adults with SCD in LA County. Related content