I left after three hours, but after that I found myself checking on him constantly, every 30 minutes or so. He kept saying he was fine. But a few days later, he ended up in the hospital. When I went to visit him, it was a shock — I had never seen a “sickler” before. I saw the yellow eyes. I saw how skinny he was. He kept wincing from the pain, but putting up a brave act. “They’re saying my kidneys are failing and stuff,” he finally said. I was so freaked out. A few mornings later, I planned to go back and bring him some Ogbono soup, his favorite. It’s a concoction of ground African bush mango seeds, cooked onions and crayfish with dark, leafy vegetables swimming in bright red palm oil. The plan was for my mom to make it but to say that I made it. So we began cooking the soup. Then we boiled water to cook semolina flour for fufu to go with it. Related story

In 2013, an inquest found a failure to follow basic procedures contributed to the death of a young woman called Sarah Mulenga after she called the emergency services while having a sickle cell crisis. Two trainee paramedics refused to take the 21-year-old to hospital, her condition deteriorated, and she later died. The high-profile case led to a number of changes for the better, but there is still a long way to go, those who have the condition say. Kehinde Salami, 36, told BuzzFeed News that many new treatments were still not being made available on the NHS. “The care and treatment for sickle cell has gone a very long way in the last 15 years. However, there is a long way to go, especially as sickle cell medications currently [available] are not free on the NHS and there definitely needs to be more progress.” Related story

Singer Tionne "T-Boz" Watkins is opening up about her battle with an incurable disease and how it affected her singing career as a member of the pop group TLC. Watkins' new memoir, "A Sick Life: TLC 'n Me: Stories from On and Off the Stage," describes how she has been able to overcome the difficulties of living with sickle cell disease. "The title means so much for me," Watkins told Robin Roberts in an exclusive interview on "GMA." "It's a strong word, 'a sick life,' 'cause I've had it all. I was told I would never live past 30; I would be disabled my whole life and never have kids." "But, no. Like I've traveled the world in TLC. I've worked with Michael Jackson," the singer continued. Related story

There are approximately 4.3 million adolescents with special health care needs in the United States, accounting for nearly one in five adolescents in our country. Special health care needs range from mental health problems to sickle cell disease to cerebral palsy. Although the experiences of these adolescents differ, they often share a need for additional support services – like help managing a range of medical appointments or access to special therapies – to assist them in achieving their highest potential in adulthood. During a one-on-one visit with the YCHW, Jessica explained how making phone calls causes her anxiety, expressed confusion about deciding between the insurance plans offered at her job, and indicated that her goal is to return to college. Together, Jessica and the YCHW identified two short-term goals and one long-term goal. The first short-term goal was to practice making polite and effective phone calls to providers and pharmacies using a script from the YCHW. Related story

Tre Adegoroye is 17 and was diagnosed with sickle cell disease at birth. The condition affects red blood cells and by the age of nine, Tre and his twin brother had both had strokes. Prodigy, the rapper from hip-hop duo Mobb Deep who passed away on Tuesday, also suffered from the disease. The NHS has launched an appeal for black blood donors to come forward to treat patients of the disease, which is also the fastest growing genetic disorder in the UK. Tre has been to hospital to receive a blood exchange, which is the term used for a full blood transfusion. Many sufferers need that on a regular basis to treat the condition. Tre has required 10 blood exchanges in the last six months, which is the equivalent of 120 units of blood or 120 separate blood donations from members of the public. Related story

Cassandra Trimnell was diagnosed with sickle cell anemia in 1987 when she was just a baby. She inherited the gene that causes this disease from both of her parents, meaning she has sickle cell type SS. This means she can experience the worst symptoms — including fatigue, extreme joint pain, anemia, and infections — at a higher rate. She's not the only one with sickle cell in her family either. Her younger sister Joanne was also born with it, and two of her other siblings have the trait, which means they don't have the disease but can pass it along to their children. She was always a lot smaller and skinnier than the other kids at school, which meant that others often treated her like she was more fragile. Related story

There’s new hope for the 70,000 to 80,000 Americans who are currently living with sickle cell disease (SCD). Thanks to new guidelines for therapy, SCD patients have better pain control during acute pain crisis and reduced hospital stays. The guidelines were presented by Jennifer Yu, MD, a pediatric hematologist/oncologist at Rady Children's Hospital-San Diego and an assistant clinical professor of pediatrics at UC San Diego School of Medicine during the 2017 American College of Physicians (ACP) Internal Medicine Annual Meeting held in San Diego. Dr. Yu said these recommendations are based mainly on the National Institutes of Health’s Evidence-Based Management of Sickle Cell Disease, Expert Panel Report 2014. Related story

A. What hematological disorders do we evaluate under these listings? 1. We evaluate non-malignant (non-cancerous) hematological disorders, such as hemolytic anemias (107.05), disorders of thrombosis and hemostasis (107.08), and disorders of bone marrow failure (107.10). These disorders disrupt the normal development and function of white blood cells, red blood cells, platelets, and clotting-factor proteins (factors). 2. We evaluate malignant (cancerous) hematological disorders, such as lymphoma, leukemia, and multiple myeloma, under the appropriate listings in 13.00, except for two lymphomas associated with human immunodeficiency virus (HIV) infection. We evaluate primary central nervous system lymphoma associated with HIV infection under 114.11B, and primary effusion lymphoma associated with HIV infection under 114.11C. B. What evidence do we need to document that you have a hematological disorder? We need the following evidence to document that you have a hematological disorder: 1. A laboratory report of a definitive test that establishes a hematological disorder, signed by a physician; or 2. A laboratory report of a definitive test that establishes a hematological disorder that is not signed by a physician and a report from a physician that states you have the disorder. Abstract source

As defined by the American Physical Therapy Association, TENS is the application of electrical stimulation to the skin for pain control. It is non-invasive, inexpensive, safe, and easy to use; a small battery-powered device applies an electric current via two or more non-invasive skin electrodes to stimulate underlying nerves and thus reduce pain perception. It can be applied with different frequencies, varying from low (< 10 Hz) to high (> 50 Hz). Intensity can also vary with low-intensity stimulation producing a sensation alone, while high-intensity stimulation triggers muscle contraction, and hence movement. Low-frequency TENS is usually given at high-intensity (producing motor contraction and sensation), while high-frequency TENS is given at lower intensities (producing both sensation and muscle contraction) (DeSantana 2008). Conventional TENS has a high-stimulation frequency (40 Hz to 150 Hz) and low intensity between 10 mA to 30 mA. The pulse duration is short (up to 50 microseconds). The onset of analgesia with this setup is virtually immediate. Pain relief lasts while the stimulus is turned on, but it usually abates when the stimulation stops. In acupuncture like settings, the TENS unit delivers low frequency stimulus trains at 1 Hz to 10 Hz, at a high stimulus intensity, close to the tolerance limit of the individual. This method is uncomfortable and is often considered for those who do not respond to conventional TENS. Pulsed (burst) TENS uses low-intensity stimuli firing in high-frequency bursts, but does not have any added advantage over the conventional method. Abstract source

"Ask Dr. Kevin” is a new feature brought to you by Pfizer Rare Disease in collaboration with the National Newspaper Publishers Association (NNPA) to increase understanding of sickle cell disease. Dr. Kevin is currently the Chief Medical Officer for Rare Disease at Pfizer. He pursued medicine after being inspired by his father’s work as a general practitioner. Dr. Kevin is passionate about raising awareness and increasing understanding of sickle cell disease in the African-American community. In this article, Dr. Kevin answers common questions about sickle cell disease and its impact on the African-American community and provides tips for living with and supporting someone with the disease. What is Sickle Cell Disease? Sickle Cell Disease (SCD) is an inherited genetic disease that affects hemoglobin, the oxygen-carrying protein within red blood cells (RBC). While normal RBCs are flexible and oval-shaped, individuals with SCD have sharp, crescent-shaped RBCs that have trouble passing through the body’s blood vessels, irritating the vessels’ lining. This irritation leads to the production of “sticky” proteins that cause RBCs to clump together, along with other cells in the blood, and creates blockages in blood flow. Abstract source