Sickle Cell Warriors


 Breaking News
  • VOICE Crisis Alert App VOICE Crisis Alert App The VOICE Crisis Alert app is the first national app created for patients and families with sickle cell disease. The app stores all its data locally...
  • World Sickle Cell Day 2018 Hello Warrior Family! Don’t forget, today, Tuesday June 19th is World Sickle Cell Day. This was specially designated by the World Health Organization in 2009 to improve the education, research, and...
  • SCD Adult Support Groups in Southern California California Warriors, great news! Cayenne Wellness is now hosting monthly support group meetings in Fresno, San Diego, Los Angles, Loma Linda, and Antelope Valley. You get to meet others with...
  • Tracing sickle cell back to one child, 7,300 years ago Tracing sickle cell back to one child, 7,300 years ago Check out this amazing article by Nalina Eggert of BBC News for a journey of SCD from 7,300 years ago.  The...
  • Meet Brittany: Caregiver, poet, and writer This week’s warrior in the spotlight is Brittany Hightower.  Brittany is a caregiver who is beautiful, intelligent, and passionate about poetry. And oh yeah, she has sickle cell. How old...

July 2011 SC News Roundup

Sickle Cell Warriors in the News

Terrance Brown spreads Sickle Cell Awareness in Florida.

Summer is a low season for blood bank donations, and 9 year old sickle cell warrior Di-Juarie helped out at a blood drive in Jackson, Michigan; getting over 40 people to donate blood. Blood donations have dropped to an all time low, the first time in a decade. We need all the blood we can get. She is 9!!! What are you doing to help out with sickle cell?

Miss Jamaica Universe was crowned last week, and she is a Sickle Cell Warrior. You go girl!!!

T-Boz is lending her voice to the National Bone Marrow Registry, urging others to sign up for the bone marrow registry and save a life.

The family of Ereck Plancher was awarded $10 million by the jury for his unlawful death. He is the athlete that passed in 2008 after a cardiac arrest following an intense workout. The jury found the Athletics Association responsible. Such a sad, tragic loss. It’s so unfortunate, his death could have been prevented.

Research News

On July 29, the first class of Texas Children’s Global Health Corps left Houston for assignment in Africa. This talented team of pediatricians and family doctors will provide medical care and treatment to thousands of children and families affected by serious or life-threatening medical conditions, including sickle cell disease, malaria, tuberculosis, malnutrition, cancer and HIV/AIDS. The team will also perform clinical research and train local health professionals to build capacity for pediatric health care in some of the world’s poorest countries. Read more about the medical mission HERE.

In a study published by the American Academy of Pediatrics, Hydroxyurea has been deemed suitable for children from 9-18months, in addition to children 2 years and above which it was used for previously. I haven’t been able to get a copy of the report, but if you have it, please share with the group.

On the research front, researchers from the Boston University School of Medicine (BUSM) were recently awarded a five-year $9 million grant from the National Heart, Lung, and Blood Institute (NHLBI) to mass-produce sickle cell anemia-specific induced Pluripotent Stem (iPS) cells. These cells will allow researchers to better study and identify the biology and mechanism of sickled cells. This isn’t a direct cure, but can provide a foundation for treatments in the future. Read more about the research grant HERE.

Move over Hydroxyurea, there is a new drug in town. A thalidomide analog is shaping up as a safe, worthy opponent of sickle cell disease, Georgia Health Sciences University researchers report. Much like hydroxyurea, the only FDA-approved therapy for sickle cell, pomalidomide increases production of fetal hemoglobin which, unlike its adult counterpart, cannot take on the destructive sickle shape. Pomalidomide also preserves bone marrow function, actually increasing proliferation of the cells that make oxygen-carrying red blood cells. The only drawback is that other forms of pomalidomide have been shown to cause birth defects. They have trialed in mice and are now moving on to human trials. Read more about it HERE.

In France, a new study proves that there is a less incidence of pulmonary hypertension in sickle cell patients than originally conceived. The study states that of the 30% of patients diagnosed with pulmonary hypertension using an echocardiogram, only 6% of them were positive when tested using an invasive right hearted catherization. Read more on the study HERE.

There is some opposition to the NCAA ruling about screening for sickle cell trait. Some detractors argue that there is not enough substantiated evidence to claim that the 17 deaths of athletes since 2007 can be attributed to sickle cell trait. It has been ruled that 42% of non traumatic deaths in the NCAA is as a result of sickle cell trait exacerbation, however, some Dr. Frempong believes that these deaths could have been attributed to heat stroke and cardiac arrest and not sickle cell.  Read more on the controversy here.

Global News

In Nigeria, the former First Lady is advocating that sickle cell testing be made mandatory for couples intending to marry, in an effort to decrease the high incidence of the disease. Read her remarks here.

Also in Nigeria, the full scale production of Nicosan is rumored to be starting soon. Read the press release HERE.

In Ghana, The Upper West Region will soon benefit from a Sickle Cell Clinic and counseling Unit. The facility, which is being set up by Sickle Cell Condition Advocates (SICCA), a non-governmental organisation in collaboration with the Government of Ghana is expected to support sickle cell patients to live longer and contribute to the development of society. Read more about it HERE.

In India, doctors are heading from Mahashatra to Canada to get some well needed training and education on sickle cell disease. Read about the alliance here.

And this rounds up the last fortnight in sickle cell news and research worldwide. Catch you next time!


About Author

Sickle Cell Warrior

Sickle Cell Warrior

Tosin is dedicated to perpetuating healthy and positive messages about sickle cell. Although sickle cell is a subject often taboo in the communities this condition is most prevalent, Tosin's message is that sickle cell is not something to be ashamed of and you can live a rich and fulfilling life with sickle cell. Sickle cell warriors are the most amazing people in the world, with a great fortitude for compassion, willpower and strength.

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