Researchers have developed an accurate, low–cost potential test for diagnosing people with sickle cell anemia. The test, based on a lateral flow strip, is designed for use in areas where SCA treatment exists but testing methods are inaccessible, such as sub-Saharan Africa, where SCA is prominent. While researchers were optimistic about the results, they recommended further testing to ensure the test’s reliability in warm climates and in the field. The study, “Towards a point-of-care strip test to diagnose sickle cell anemia,” was published in PLOS One.

For decades physicians have known that a few children like Ceniya have unusual genetic mutations that counteract the effects of the sickle-cell flaw. Researchers would like to re-create their uncommon physiology in everyone with sickle-cell anemia. Though not technically a cure, the compensatory treatment would spare many of the 300,000 infants around the world who are born every year with sickle cell and who often do not live beyond childhood. It would also make life a lot easier for the more than 70,000 individuals living with the disease in the U.S., who, despite treatment that mitigates some of the most serious effects of the condition, often die in their 40s. Investigators are now beginning to test such approaches, which depend on the precise alteration, or editing, of certain genes using new techniques in genetic engineering. (As will be addressed shortly, providing the compensatory mechanism should be easier to achieve than fixing the original sickle-cell genetic defect.)

Olamide Orekunrin was studying to become a doctor in the UK a few years ago when her younger sister fell seriously ill while traveling in Nigeria. The 12-year-old girl, who'd gone to the West African country on holiday with relatives, needed urgent care but the nearest hospital couldn't deal with her condition. Orekunrin and her family immediately began looking for an air ambulance service to rapidly transport the girl, a sickle cell anemia sufferer, to a more suitable healthcare facility. They searched all across West Africa but were stunned to find out there was none in the whole region.

Many people with sickle cell disease will die prematurely, but treatment is improving. Doctors believe that the pain of a sickle cell crisis comes from the patient’s crescent-shaped red blood cells building up in the veins and cutting off oxygen to tissue and bones. If it persists, the lack of oxygen can damage vital organs. During a crisis, powerful painkillers are often the only relief. But opioid-based medications are also highly addictive and have come under increased scrutiny as the rate of overdoses rises among the general public. In the emergency room, doctors frequently worry that the person in front of them is one of the estimated 1.9 million Americans who are addicted to pain pills, or one of the 19,000 or so who will die each year from an overdose, according to the American Society of Addiction Medicine.

In the United States today, one of every 400 African-American children and one in every 1,250 Hispanic children are born with sickle cell disease, a debilitating, painful condition. Patients with sickle cell disease suffer from abnormally shaped, rigid and adhesive red blood cells. These abnormal cells "close off" blood vessels and cause recurring, painful episodes called "sickle cell crises." An individual with sickle cell disease can develop a crisis at any time – the pain can last for days or even weeks and is frequently severe enough to require hospitalization. These painful events associated with SCD can be more severe and occur more frequently in cold weather.

When Janoi Burgess was a child, he thought doctor appointments were fun. “I used to love it because they had a section where you could play games,” said Burgess, who was born with sickle cell anemia, an inherited blood disorder. “They were really nice and friendly.” But when he turned 21, the South Florida resident could no longer go to his pediatric specialist. Instead, he “bounced around” to various primary-care doctors for adults, none of whom seemed well versed in the details of his condition. When he had a painful sickle cell crisis two years later, his only choice was to go to a hospital emergency department, where, he says, he waited three hours for pain medication.

It could be impossible to know when Sickle Cell Disease (SCD), prior to this fall, was last mentioned on primetime television and wasn’t used as an insult or the butt of a joke. Just last month Keke Palmer’s character mentioned it on “Scream Queens” when asked to think of a noble cause to attach to her Zayday-for-president-party. They even let her have enough screen time to drop a tagline, emphasizing just how horrific the genetic disorder is. Sickle Cell’s moment was ultimately overshadowed by the jokes and quest to find a more horrific illness to attach to the party of Zayday’s rival. Nonetheless, Sickle Cell had its moment. What’s important here is that SCD was name-dropped four times by a main character. However briefly, it was part of her story.

The World Sickle Cell Day is on 19th of June. The wear red for sickle cell day was established by the United Nations General Assembly in 2008, to raise awareness about the sickle cell disease globally. Sickle cell affects us all directly or indirectly and it has affected and continues to affect many families who have lost family members as a result of the condition. Contrary to common knowledge, people in other countries are also affected like India, Saudi Arabia, Turkey, Arabic Peninsula, Brazil, Surinam, Guiana, Southern Italy, Greece and black people in diaspora. Studies have shown that Nigeria has the largest population of people with Sickle Cell Disease in the world, and with over 150,000 Nigerian babies born with sickle cell every year.

Vanderbilt University Medical Center is part of a 6-year, $4.4 million grant from the National Institutes of Health to improve the use of prescribed medication by sickle cell patients.
Funded by the National Heart, Lung and Blood Institute (Grant No. 1U01HL133996-01), the new Sickle Cell Disease Implementation Program includes researchers from St. Jude Children’s Research Hospital, the University of Memphis, Methodist University Hospital, Baptist Memorial Hospital and Vanderbilt.

The team will jointly develop, assess and integrate mobile health applications to manage hydroxyurea treatments among patients with sickle cell disease and identify barriers to medical care and any constraints on proper use of the medication.

In addition, the team will also make the findings of the study available nationwide to encourage best practice and wider use of hydroxyurea in the national sickle cell community.

Grammy-nominated songwriter and music producer, Nana Kwabena has helped create hits for many notable artists including John Legend, Rick Ross and fellow Wondaland label mates Janelle Monae and Jidenna. However, his musical genius and path to the entertainment industry began in one of the most unlikely places—a hospital.

The 31-year-old was diagnosed with sickle cell disease at a young age and says that he spent so much of his childhood in and out of medical facilities; it often felt like he was raised in the hospital.