ROCHESTER, N.Y. — With sickle cell anemia, it’s never just one kind of pain.
Sometimes it’s a vicious ambush, fast and pulsating. Sometimes it settles in slowly and stays for days, throbbing deep in the bones.
Sometimes the pain is in one spot. Sometimes it’s in three. Sometimes it’s everywhere, hundreds of knives, jabbing and cutting from head to toe, grinding down the body and foreclosing on any hope for the future.
“It’s the worst feeling in the world,” said Stephanie Ramos of Irondequoit. “It’s like your body is attacking its own self. Beating up on its own self. … It’s a horrible disease. I hate it.”
Ramos knows sickle cell anemia well. She was born with it 25 years ago. Doctors told her mother then that she would be lucky to reach adulthood; each birthday was a celebration and, quietly, a foreboding.
What would the next year bring? How many crises, how many trips to the hospital? How much more to be endured, and for how much longer?
It’s a disease of pain, and three years ago, Ramos was exhausted by it.
Wixon: Sickle cell disease can’t hold back Lincoln’s Tafari Witter through sporting, academic endeavors
Tafari Witter is near midcourt, bent forward, tugging on the bottom of his shorts, trying to catch his breath. A substitute is headed to the scorer’s table, but Witter looks over to the sidelines and, with a wave of his hand, indicates he’s not leaving the game.
It might be the only time that Lincoln’s starting point guard doesn’t have his priorities straight.
Witter is a razor-sharp student who is on track to be valedictorian of Lincoln’s Class of 2015. He loves Advanced Placement Calculus BC, is part of the Dallas ISD’s Future Leaders Program and in the fall will attend Texas, where he eventually wants to get a master’s degree in business administration.
NBA point guard Derrick Rose is among the people who inspire him, but so is a star from a very different arena: theoretical physicist Stephen Hawking.
Lincoln coach Cedric Patterson smiles when he hears that.
“He’s a unique kid,” Patterson said.
Witter is so unique, and interesting, and engaging, it’s hard to squeeze his sickle cell disease into the conversation. And he likes it that way.
Am J Med. 2015 May;128(5):541-4. doi: 10.1016/j.amjmed.2014.11.020. Epub 2014 Dec 9.
Quality improvement process in a sickle cell infusion center.
Whiteman LN1, Lanzkron S2, Stewart RW3, Haywood C Jr4, Strouse JJ3, Feldman L3.
The American Pain Society recommends that individuals experiencing sickle cell crisis receive parenteral pain medication within 30 minutes of assessment. We examined factors affecting achievement of this standard at the Johns Hopkins Sickle Cell Infusion Center.
Baseline patient care time intervals and data on variables affecting the ability to achieve the American Pain Society goal were measured. Time to first parenteral opiate administration was modeled using simple and multivariable linear regression.
Mean time from initial assessment to first dose was initially 41 minutes. Increased nurse to patient ratio decreased time to first dose.
Of the factors associated with improved times to first dose, only nurse to patient ratio is amenable to process change, suggesting it as a potential target for future interventions.
Copyright © 2015 Elsevier Inc. All rights reserved.
PMID: 25498167 [PubMed – in process]