But one series of paintings he's created is darker. Here, deep-red discs contrast with misshapen, bluish-purple ones against a black background. One canvas shows an African face drowning in the red and blue shapes, eyes streaming with tears, mouth agape in pain. The work reflects his lifelong struggle with sickle-cell disease. Nazaire, a 43-year-old Haitian-American, figures he's been hospitalized more than 300 times since he was a child.
The rap artist Prodigy died this week after a lifetime of suffering from sickle cell disease. The death of the rap artist Prodigy (Albert Johnson, half of the duo Mobb Deep) at only 42 this week, after a lifetime of suffering from sickle cell disease, was a reminder of the devastating cost of the sometimes fatal genetic disorder -- and of the failure to cure it. It has been 61 years since the discovery of the mutation responsible for sickle cell, which affects about 100,000 people in the U.S., and 30 years since scientists found a compensatory mutation -- one that keeps people from developing sickle cell despite inheriting the mutant genes. Last year, when STAT examined the lack of progress, scientists and hospital officials were frank about one reason for it: Other genetic disorders, notably cystic fibrosis, attracted piles of money that led to cures, but sickle cell strikes the "wrong" kind of people, including African-Americans, and so has historically been starved for funds. The genetic mutation that causes sickle cell allows red blood cells to cramp up in a way that impedes their flow through blood vessels.
In late 2012, French microbiologist Emmanuelle Charpentier approached a handful of American scientists about starting a company, a Crispr company. They included UC Berkeley's Jennifer Doudna, George Church at Harvard University, and his former postdoc Feng Zhang of the Broad Institute--the brightest stars in the then-tiny field of Crispr research. Back then barely 100 papers had been published on the little-known guided DNA-cutting system. It certainly hadn't attracted any money. But Charpentier thought that was about to change, and to simplify the process of intellectual property, she suggested the scientists team up.
Pain in sickle cell disease (SCD) is often associated with increased morbidity, mortality, and high healthcare costs. The standard method for predicting the absence, presence, and intensity of pain has long been self-report. However, medical providers struggle to manage patients based on subjective pain reports correctly and pain medications often lead to further difficulties in patient communication as they may cause sedation and sleepiness. Recent studies have shown that objective physiological measures can predict subjective self-reported pain scores for inpatient visits using machine learning (ML) techniques. In this study, we evaluate the generalizability of ML techniques to data collected from 50 patients over an extended period across three types of hospital visits (i.e., inpatient, outpatient and outpatient evaluation). We compare five classification algorithms for various pain intensity levels at both intra-individual (within each patient) and inter-individual (between patients) level. While all the tested classifiers perform much better than chance, a Decision Tree (DT) model performs best at predicting pain on an 11-point severity scale (from 0-10) with an accuracy of 0.728 at an inter-individual level and 0.653 at an intra-individual level. The accuracy of DT significantly improves to 0.941 on a 2-point rating scale (i.e., no/mild pain: 0-5, severe pain: 6-10) at an intra-individual level. Our experimental results demonstrate that ML techniques can provide an objective and quantitative evaluation of pain intensity levels for all three types of hospital visits.
Several times a year, Lance Jones finds himself in paralyzing pain. He can't predict when a "crisis" will come on or which part of his body it will hit. "If it happens in your knee, you will feel pain up and down that entire leg," he said. "If your shoulder starts to go into a crisis, then ... you can't even pick up a pencil to write your name." Sometimes even powerful narcotics can't ease the pain and the 28-year-old musician ends up in the emergency room.