Minnesota criticized for lack of sickle cell care
MINNEAPOLIS (AP) — Advocates for people with sickle cell disease are criticizing Minnesota's lack of care, saying the number of related deaths in the state is unclear because officials don't track adult cases.
Sickle cell disease patients look for answers
NEW HAVEN, Conn. (AP) — When 9-year-old Jeremy Brown is in pain, it feels like he is being stabbed, while the pain experienced by Deborah Oliver, 40, is like a hundred simultaneous charley horses.
Brown, of Bridgeport, and Oliver, of New Haven, have sickle cell disease, a genetic blood disorder that causes excruciating pain, life-threatening complications and a shortened life expectancy. Almost one-half of sickle cell patients die in their 40
This 9-year-old violin prodigy has fought off strokes and paralysis. Now his family seeks the money for a transplant.
WINSTON-SALEM, N.C. — At age 4, musical prodigy Caesar Sant could play Vivaldi and Tchaikovsky on the violin, knew six languages and was easily doing third-grade math.
At age 5, he had his first stroke.
It was a blow that hit the reset button on the musical and intellectual prowess of Caesar, who had been diagnosed with sickle cell disease at birth and began playing violin at age 2.
Parents of boy with sickle cell form nonprofit, give back to Duke Children’s Hospital
The Mix 101.5 WRAL-FM Radiothon raises money for family support programs benefiting patients and families at Duke Children's Hospital.
The Okafor family went through a tough time when their newborn son was diagnosed with sickle cell disease.
Kaiden Okafor's family describes the 3-year-old as a happy boy, especially near Christmastime.
But almost immediately after he was born, his parents, Devon and Shanece, remember there were complications.
Valley Santa: Mother Of 4 Asks For Help With Christmas Presents
Michelle, a mother of four children, is battling a number of health problems including sickle cell disease and cervical cancer.
Her health problems cause her to be in and out of the hospital and soon, she will have surgery.
As a result of her health problems, she is not able to work.
“Because I am unable to work or keep unemployment, it saddens me because around this time of year I’m unable to actually do Christmas shopping,” Michelle wrote in a letter to Valley Santa.
STAMFORD — Peter Leandre was going through pre-season drills with the freshmen football team at Westhill when he began to feel dizzy and weak.
He knew his body needed a break, but fearing he would look soft to his coaches and teammates, Leandre kept going. Pushing through the agony like all football players are taught to do.
He said nothing to his coaches, gutting through the grueling practice, but just barely.
Groundbreaking poll about sickle cell disease in black community released
A new poll about sickle cell disease (SCD), presented by the National Newspaper Publishers Association (NNPA) and Pfizer, revealed that while the majority of respondents were familiar with the illness, less than 40 percent realized that it disproportionately affects people of African descent.
Hospital provides help to locals living with sickle cell
AUGUSTA – Life is never the same for a child diagnosed with sickle cell disease. They must learn the strategies necessary to live a normal live with an uncommon condition. The National Heart, Lung, and Blood Institute estimates between 90,000 to 100,000 Americans are living with sickle cell.
Hicks column: Taking steps to help people with a killer disease
Forty years ago, David Mack started counseling folks with sickle cell anemia in North Charleston.
The future state lawmaker from North Charleston had a degree in biology, a family history of community activism and a big heart. And what he learned working with the Committee on Better Racial Assurance nearly broke it.
Sickle cell disease is one of those genetic maladies for which there is no cure. Anyone who has it is in for a lifetime of pain and suffering.
Deer Park Police rally around ‘little warrior’ battling sickle cell disease
On most days, two-year old Peyton Williams is laughing, smiling and playing, just like any other toddler.
On other days, she's getting blood transfusions.
"She's a tough kid. I call her my little warrior," said her dad, Deer Park police officer Brandon Williams.
Families and experts say South Carolina kids who need Medicaid would be hurt by Obamacare replacement plan
Since she was born, 11-year-old Tymia McCullough has received 45 blood transfusions and has been hospitalized 49 times, mostly at the Medical University of South Carolina Children's Hospital.
Tymia was diagnosed in the womb with a form of sickle cell disease. The genetic blood disorder triggers debilitating episodes of intense pain. Sometimes it hurts so much, Tymia said, it feels like she's being stabbed with sharp knives from the inside out.
A French teen who was given gene therapy for sickle cell disease more than two years ago now has enough properly working red blood cells to dodge the effects of the disorder, researchers report.
The first-in-the-world case is detailed in Thursday's New England Journal of Medicine.
A new drug shows dramatic promise to help Sickle Cell patients reduce painful episodes.
UNC's Dr. Kenneth Ataga was the principal investigator for an investigational drug called Crizanlizumab. The trial involved 198 participants in a multi-center, randomized trial.
The “Sustain Trial” results were published online by the New England Journal of Medicine.
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- Business WireImara Presented Positive, Interim Phase 2a Data on IMR-687 for the Treatment of Sickle Cell Disease at the 24th Congress of the European Hematology AssociationJune 18, 2019
- Watertown Daily TimesCombat Sickle Cell Disease by Filling the Missing TypesJune 22, 2019
- Watertown Daily TimesSickle Cell: One Gene, Many Faces, And A Quest For A CureNovember 14, 2018
- Connecticut PostBridgeport FD raised nearly $10K for Sickle Cell researchOctober 3, 2018
- Watertown Daily TimesOne woman's struggle with sickle cell disease and 3 things she wishes you knewSeptember 26, 2018